#LupusChat Transcript
Healthcare social media transcript of the #LupusChat hashtag.
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See #LupusChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | #LupusChat @Lupus_Chat 🤗Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/HszkBj07c0 |
 | RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: 🎉 It's #LupusChat Sunday! We're discussing the Impact of Chronic Illness on Relationships TODAY at 3pm Eastern Time. Want to join? Follow these steps: 💻📲 Follow @Lupus_Chat ⏰ Set your alarms #️⃣ Follow the #LupusChat tag at 3pm EST to join the conversation👇 https://t.co/oSAwWgnk56 |
 | Tiffany ⁷ @TiffanyAndLupus Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/CHnD13iRDe |
 | Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: 🤗Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/HszkBj07c0 |
| #LupusChat @Lupus_Chat Communication can be frustrating & quite complex while juggling chronic illness. Personal health has a major impact on both the way we are treated & interact with others. It’s important that we unpack these aspects of our relationships.#LupusChat https://t.co/dxcMzWgiB4 |
| #LupusChat @Lupus_Chat 🎉 Bienvenidos a #LupusChat! Hoy discutiremos como la salud puede afectar nuestras relaciones con los demás. Juntos determinaremos cómo establecer comunicación al mismo tiempo que establecemos límites personales. https://t.co/UZDTFCwRM2 |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Communication can be frustrating & quite complex while juggling chronic illness. Personal health has a major impact on both the way we are treated & interact with others. It’s important that we unpack these aspects of our relationships.#LupusChat https://t.co/dxcMzWgiB4 |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Communication can be frustrating & quite complex while juggling chronic illness. Personal health has a major impact on both the way we are treated & interact with others. It’s important that we unpack these aspects of our relationships.#LupusChat https://t.co/dxcMzWgiB4 |
| #LupusChat @Lupus_Chat Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
 | RaquelRoschell @raquelonpurpose Its that time once again folks! This feed will be full of #LupusChat for the next hour or so. Let's get it! |
 | Carly by Nature @SynceNerd_Carli #LupusChat Tiiiiiiiiime! Let's goooooooooo!! https://t.co/zDRSELEHUW |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: 🤗Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/HszkBj07c0 |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: 🎉 Bienvenidos a #LupusChat! Hoy discutiremos como la salud puede afectar nuestras relaciones con los demás. Juntos determinaremos cómo establecer comunicación al mismo tiempo que establecemos límites personales. https://t.co/UZDTFCwRM2 |
| #LupusChat @Lupus_Chat If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/SV6dh6K3Fp |
 | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: 🎉 Bienvenidos a #LupusChat! Hoy discutiremos como la salud puede afectar nuestras relaciones con los demás. Juntos determinaremos cómo establecer comunicación al mismo tiempo que establecemos límites personales. https://t.co/UZDTFCwRM2 |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Communication can be frustrating & quite complex while juggling chronic illness. Personal health has a major impact on both the way we are treated & interact with others. It’s important that we unpack these aspects of our relationships.#LupusChat https://t.co/dxcMzWgiB4 |
| #LupusChat @Lupus_Chat REMEMBER to type the tag ~> #LupusChat in EACH of your tweets to join the conversation. This is how we will share them with the online #lupus community! https://t.co/SGjTmFfp78 |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: 🤗Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/HszkBj07c0 |
| #LupusChat @Lupus_Chat Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat https://t.co/1PslwMldeq |
| #LupusChat @Lupus_Chat La comunicación puede ser frustrante y bastante compleja al mismo tiempo que manejamos con enfermedades crónicas. #LupusChat https://t.co/VAc0TO3o5o |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/SV6dh6K3Fp |
 | Rachael (rah-shell) Jay ⚡ @_RachaelTV RT @SynceNerd_Carli: #LupusChat Tiiiiiiiiime! Let's goooooooooo!! https://t.co/zDRSELEHUW |
| #LupusChat @Lupus_Chat As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. https://t.co/0qyJzUe5La |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV RT @Lupus_Chat: 🤗Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/HszkBj07c0 |
| #LupusChat @Lupus_Chat Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. https://t.co/LTjf0ZVbtL |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/SV6dh6K3Fp |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat https://t.co/1PslwMldeq |
| #LupusChat @Lupus_Chat Si eres nuevo en @Lupus_Chat quieres saber cómo participar, sólo tienes que hacer clic en la etiqueta ~ > #LupusChat a unirse a nosotros! https://t.co/OFOeDD8z0X |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: La comunicación puede ser frustrante y bastante compleja al mismo tiempo que manejamos con enfermedades crónicas. #LupusChat https://t.co/VAc0TO3o5o |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. https://t.co/0qyJzUe5La |
| #LupusChat @Lupus_Chat Utilice la etiqueta ~> #LupusChat en cada uno de sus tweets para unirse a la conversación. Los vamos a compartir en la comunidad de #lupus! https://t.co/8gIwoG9eta |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/SV6dh6K3Fp |
| #LupusChat @Lupus_Chat Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat https://t.co/1PslwMldeq |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: REMEMBER to type the tag ~> #LupusChat in EACH of your tweets to join the conversation. This is how we will share them with the online #lupus community! https://t.co/SGjTmFfp78 |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: REMEMBER to type the tag ~> #LupusChat in EACH of your tweets to join the conversation. This is how we will share them with the online #lupus community! https://t.co/SGjTmFfp78 |
| #LupusChat @Lupus_Chat Utilizar Q1 o A1 para responder a cada pregunta. Esto ayuda a conectar sus respuestas a cada pregunta en nuestro post-chat #LupusChat https://t.co/yByoZp0IUT |
 | Bri Montgomery @freetobeBri RT @TiffanyAndLupus: Welcome to #LupusChat! Today we’ll discuss how strongly health can impact our relationships with others. Together we will determine how to establish communication while also setting personal boundaries. 🗣🛑💜 https://t.co/CHnD13iRDe |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
| #LupusChat @Lupus_Chat Para cada pregunta de dos partes, asegúrese de agregar Q1A o A1B antes de cada una de sus respuestas. #LupusChat https://t.co/aE3ubkgbhh |
| #LupusChat @Lupus_Chat Por favor, respete a nuestros invitados especiales y unos a otros y guardar todas las preguntas personales para después de #LupusChat. https://t.co/mKLjtgYv7D |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Hey everyone, Christele here in NY, diagnosed in 2007 and co-host of #LupusChat. My fav ice cream flavor is either cherry vanilla or dulce de leche, depending on my mood. |
| #LupusChat @Lupus_Chat Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y cuál es tu sabor de helado favorito? https://t.co/8oodnOipt8 |
| Tiffany ⁷ @TiffanyAndLupus Hi 👋🏾! It’s Tiffany, your #LupusChat co-host from NYC! I’ve been kicking lupus butt since 2010 & my current favorite ice cream flavor is green tea! 🍨🍨🍨 https://t.co/Y1bsejuffp |
 | You cant fight the good fight if you're dead @sickysummie Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: the fancy stuff with fruit chunks or swirls of chocolate 🥰🍧💸 #lupuschat |
| #LupusChat @Lupus_Chat RT @Xtel007: Hey everyone, Christele here in NY, diagnosed in 2007 and co-host of #LupusChat. My fav ice cream flavor is either cherry vanilla or dulce de leche, depending on my mood. |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: Hey everyone, Christele here in NY, diagnosed in 2007 and co-host of #LupusChat. My fav ice cream flavor is either cherry vanilla or dulce de leche, depending on my mood. |
| Tiffany ⁷ @TiffanyAndLupus RT @sickysummie: Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: the fancy stuff with fruit chunks or swirls of chocolate 🥰🍧💸 #lupuschat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: Hi 👋🏾! It’s Tiffany, your #LupusChat co-host from NYC! I’ve been kicking lupus butt since 2010 & my current favorite ice cream flavor is green tea! 🍨🍨🍨 https://t.co/Y1bsejuffp |
| #LupusChat @Lupus_Chat RT @sickysummie: Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: the fancy stuff with fruit chunks or swirls of chocolate 🥰🍧💸 #lupuschat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat Hi everyone! I am Raquel and I live in Texas. I was diagnosed couple yrs ago after yrs of pain and fatigue. I love any kind of chocolatey ice cream. #LupusChat |
| #LupusChat @Lupus_Chat @TheBigBrownGirl don't forget to include #LupusChat in your tweets or we can't see them! |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
 | Brian Vogel @bvogel9 RT @Lupus_Chat: 🎉Today's the day!! Join us at 3pm Eastern Time for our #LupusChat discussion on The Impact of Chronic Illness on Relationships! We'll examine how health affects our interactions with others. ⏰ Set those alarms and prep your snacks. 👇👇👇 https://t.co/Nsvn3pYAKs |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat hey everyone! I'm rachael (rah-shell). Iowa, USA. Dx SLE 2009. If I could have any flavor right now it might be the @HaloTopCreamery dairy free oatmeal cookie #LupusChat |
| Carly by Nature @SynceNerd_Carli Hey everyone! Carly here in VA, Patient Advocate and Co-host of #LupusChat. Diagnosed w/ SLE in 2011. My favorite icecream flavor is Dulce de Leche. https://t.co/4ajrKkH3wq |
| Carly by Nature @SynceNerd_Carli ¡Hola a todos! Soy Carly y estoy en Virginia. Soy un defensor de pacientes y coanfitrión de #LupusChat. Me diagnosticaron Lupus en 2011. Mi sabor favorito de helado es Dulce de Leche https://t.co/Ge6zVn3YA4 |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Communication can be frustrating & quite complex while juggling chronic illness. Personal health has a major impact on both the way we are treated & interact with others. It’s important that we unpack these aspects of our relationships.#LupusChat https://t.co/dxcMzWgiB4 |
 | Nae :) @heynaehey_ @Lupus_Chat I'm Nae!!! I'm from Memphis, Tennessee. I have SLE & Lupus Nephritis. My favorite ice cream flavor is strawberry, coming close in second is chocolate vanilla swirl😍 #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| Carly by Nature @SynceNerd_Carli RT @raquelonpurpose: Its that time once again folks! This feed will be full of #LupusChat for the next hour or so. Let's get it! |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/SV6dh6K3Fp |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: REMEMBER to type the tag ~> #LupusChat in EACH of your tweets to join the conversation. This is how we will share them with the online #lupus community! https://t.co/SGjTmFfp78 |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: La comunicación puede ser frustrante y bastante compleja al mismo tiempo que manejamos con enfermedades crónicas. #LupusChat https://t.co/VAc0TO3o5o |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat https://t.co/1PslwMldeq |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. https://t.co/0qyJzUe5La |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. https://t.co/LTjf0ZVbtL |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Si eres nuevo en @Lupus_Chat quieres saber cómo participar, sólo tienes que hacer clic en la etiqueta ~ > #LupusChat a unirse a nosotros! https://t.co/OFOeDD8z0X |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Utilice la etiqueta ~> #LupusChat en cada uno de sus tweets para unirse a la conversación. Los vamos a compartir en la comunidad de #lupus! https://t.co/8gIwoG9eta |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Utilizar Q1 o A1 para responder a cada pregunta. Esto ayuda a conectar sus respuestas a cada pregunta en nuestro post-chat #LupusChat https://t.co/yByoZp0IUT |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Para cada pregunta de dos partes, asegúrese de agregar Q1A o A1B antes de cada una de sus respuestas. #LupusChat https://t.co/aE3ubkgbhh |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Por favor, respete a nuestros invitados especiales y unos a otros y guardar todas las preguntas personales para después de #LupusChat. https://t.co/mKLjtgYv7D |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: Hey everyone, Christele here in NY, diagnosed in 2007 and co-host of #LupusChat. My fav ice cream flavor is either cherry vanilla or dulce de leche, depending on my mood. |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y cuál es tu sabor de helado favorito? https://t.co/8oodnOipt8 |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: Hi 👋🏾! It’s Tiffany, your #LupusChat co-host from NYC! I’ve been kicking lupus butt since 2010 & my current favorite ice cream flavor is green tea! 🍨🍨🍨 https://t.co/Y1bsejuffp |
| Carly by Nature @SynceNerd_Carli RT @sickysummie: Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: Hola! I'm Summer in Seattle with #lupus #uctd. Favorite ice cream: the fancy stuff with fruit chunks or swirls of chocolate 🥰🍧💸 #lupuschat |
| Carly by Nature @SynceNerd_Carli @sickysummie Welcome back to #LupusChat Summer!! |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @chronicutie Hey Maureen. My little sister is OBSESSED with cookies and cream lol #LupusChat |
 | Kate Sattler | Sweet Freeze @katesattler @Lupus_Chat #LupusChat I’m kate in Portland. I’m still in my first year of diagnosis. My favorite flavor is pistachio. |
| Carly by Nature @SynceNerd_Carli RT @raquelonpurpose: @Lupus_Chat Hi everyone! I am Raquel and I live in Texas. I was diagnosed couple yrs ago after yrs of pain and fatigue. I love any kind of chocolatey ice cream. #LupusChat |
| Carly by Nature @SynceNerd_Carli @raquelonpurpose @Lupus_Chat Welcome back to #LupusChat Raquel! |
| Carly by Nature @SynceNerd_Carli @Vin_The_Fin @Lupus_Chat Welcome back to #LupusChat Vincent! Great to see you |
| Carly by Nature @SynceNerd_Carli RT @_RachaelTV: @Lupus_Chat hey everyone! I'm rachael (rah-shell). Iowa, USA. Dx SLE 2009. If I could have any flavor right now it might be the @HaloTopCreamery dairy free oatmeal cookie #LupusChat |
| You cant fight the good fight if you're dead @sickysummie @SynceNerd_Carli Thanks Carly. It's nice to see all the smiling faces :) #LupusChat |
| Carly by Nature @SynceNerd_Carli @_RachaelTV @Lupus_Chat @HaloTopCreamery Welcome back to #LupusChat Rachael! |
| Carly by Nature @SynceNerd_Carli RT @katesattler: @Lupus_Chat #LupusChat I’m kate in Portland. I’m still in my first year of diagnosis. My favorite flavor is pistachio. |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat Hi everyone! I am Raquel and I live in Texas. I was diagnosed couple yrs ago after yrs of pain and fatigue. I love any kind of chocolatey ice cream. #LupusChat |
| Carly by Nature @SynceNerd_Carli @katesattler @Lupus_Chat Welcome to #LupusChat Kate! Thanks for joining us today |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @_RachaelTV @Lupus_Chat @HaloTopCreamery Whoa what? 👀 I need to look for that. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat I'm Nae!!! I'm from Memphis, Tennessee. I have SLE & Lupus Nephritis. My favorite ice cream flavor is strawberry, coming close in second is chocolate vanilla swirl😍 #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat hey everyone! I'm rachael (rah-shell). Iowa, USA. Dx SLE 2009. If I could have any flavor right now it might be the @HaloTopCreamery dairy free oatmeal cookie #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: Hey everyone! Carly here in VA, Patient Advocate and Co-host of #LupusChat. Diagnosed w/ SLE in 2011. My favorite icecream flavor is Dulce de Leche. https://t.co/4ajrKkH3wq |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat I'm Nae!!! I'm from Memphis, Tennessee. I have SLE & Lupus Nephritis. My favorite ice cream flavor is strawberry, coming close in second is chocolate vanilla swirl😍 #LupusChat |
| Carly by Nature @SynceNerd_Carli @missnaedotcom @Lupus_Chat Welcome back to #LupusChat Nae! 💜 |
| #LupusChat @Lupus_Chat RT @katesattler: @Lupus_Chat #LupusChat I’m kate in Portland. I’m still in my first year of diagnosis. My favorite flavor is pistachio. |
| Bri Montgomery @freetobeBri Bri, I'm in DC diagnosed 2010 it's hard to pick but I'll say strawberry cheesecake #LupusChat |
| Carly by Nature @SynceNerd_Carli @chronicutie Thanks for joining us today for #LupusChat Maureen! |
| #LupusChat @Lupus_Chat Everyone ready? Here comes Question 1! #LupusChat https://t.co/fLoP4hC3k2 |
| #LupusChat @Lupus_Chat RT @freetobeBri: Bri, I'm in DC diagnosed 2010 it's hard to pick but I'll say strawberry cheesecake #LupusChat |
| #LupusChat @Lupus_Chat @bvogel9 Welcome back Brian! Remember to use #LupusChat in each tweet so the community can see. https://t.co/3BDKNUckto |
| #LupusChat @Lupus_Chat #LupusChat |
| #LupusChat @Lupus_Chat Q1: How has Lupus and/or chronic illness affected your relationships with others? #LupusChat https://t.co/axWVMlSInj |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q1: Q1: How has Lupus and/or chronic illness affected your relationships with others? #LupusChat https://t.co/axWVMlSInj |
| #LupusChat @Lupus_Chat #LupusChat |
 | Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q1: Q1: How has Lupus and/or chronic illness affected your relationships with others? #LupusChat https://t.co/axWVMlSInj |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Xtel007 @Lupus_Chat @HaloTopCreamery try target if you have one nearby! but I'm warning you...you might eat the whole thing. it's amazing! #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Let’s get our #LupusChat party started! Please share your name, location, connection to lupus, & what is your favorite ice cream flavor? 🍧🍨🍦 https://t.co/vZlYQwYMUl |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @SynceNerd_Carli @Lupus_Chat @HaloTopCreamery thanks! had to skip my sunday nap because i'm working early tomorrow so it all fell into place! :) #lupuschat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. Having Lupus has definitely affected how people see me and interact with me, Which in turns affect how I interact with them and how much of myself I let them see. #LupusChat |
| #LupusChat @Lupus_Chat @carlatodd2 Welcome to #LupusChat Carla! Remember to use the tag #LupusChat in each tweet so the community can see. https://t.co/zBGJ0J06a8 |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q1: Q1: How has Lupus and/or chronic illness affected your relationships with others? #LupusChat https://t.co/axWVMlSInj |
 | Rebecca Cokley @RebeccaCokley RT @Lupus_Chat: 🔊 Upcoming #LupusChat Alert: 🔊 Upcoming #LupusChat Alert: Join us tomorrow, Sunday Aug. 19th at 3pm Eastern Time, as we discuss The Impact of Chronic Illness on Relationships! We'll explore how chronic illness impacts our interactions with the people in our lives. Set your alarms!! ⏰🕒 https://t.co/ObNo4VH5aq |
| #LupusChat @Lupus_Chat #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @freetobeBri: Bri, I'm in DC diagnosed 2010 it's hard to pick but I'll say strawberry cheesecake #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat Ivey Janette,Albuquerque. DX'D with SLE/lupus nephritis 1995. Favorite ice cream flavors are chocolate and chocolate chip. Yum yum. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. My fatigue and lack of energy has also affected how much I can do, and not many people in my life were able to adjust their expectations of me and what I can do. #LupusChat |
| #LupusChat @Lupus_Chat Están todos listos? Aquí viene la pregunta 1! (Q1) #LupusChat https://t.co/600xh86dIB |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. I’ve definitely had friends invite me to things I clearly couldn’t do because I was so sick and get upset. They eventually stopped. And then kept not inviting me after I got better. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @katesattler: @Lupus_Chat #LupusChat I’m kate in Portland. I’m still in my first year of diagnosis. My favorite flavor is pistachio. |
| Tiffany ⁷ @TiffanyAndLupus RT @missnaedotcom: @Lupus_Chat I'm Nae!!! I'm from Memphis, Tennessee. I have SLE & Lupus Nephritis. My favorite ice cream flavor is strawberry, coming close in second is chocolate vanilla swirl😍 #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: Hey everyone! Carly here in VA, Patient Advocate and Co-host of #LupusChat. Diagnosed w/ SLE in 2011. My favorite icecream flavor is Dulce de Leche. https://t.co/4ajrKkH3wq |
| #LupusChat @Lupus_Chat Q1: Cómo ha afectado el Lupus y /o la enfermedad crónica sus relaciones con los demás? #LupusChat https://t.co/0WtiVQMEY2 |
| Tiffany ⁷ @TiffanyAndLupus RT @_RachaelTV: @Lupus_Chat hey everyone! I'm rachael (rah-shell). Iowa, USA. Dx SLE 2009. If I could have any flavor right now it might be the @HaloTopCreamery dairy free oatmeal cookie #LupusChat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A1 : My closest friends get me and are the best. I feel closer to people who also live with chronic illness.I haven't had any negative effects so far. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. It took a while, but I got to the point where I could distant myself from people who can’t accept and be supportive of my new normal. #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A1 : @Lupus_Chat A1 : My closest friends get me and are the best. I feel closer to people who also live with chronic illness.I haven't had any negative effects so far. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q1: Q1: Cómo ha afectado el Lupus y /o la enfermedad crónica sus relaciones con los demás? #LupusChat https://t.co/0WtiVQMEY2 |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat Ivey Janette,Albuquerque. DX'D with SLE/lupus nephritis 1995. Favorite ice cream flavors are chocolate and chocolate chip. Yum yum. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A1. Having Lupus has definitely affected how people see me and interact with me, Which in turns affect how I interact with them and how much of myself I let them see. #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A1: Lupus has made me the "unreliable" friend. I'm usually unable to be social or communicate as often as I use to because I'm usually so tired or in pain. I'm seen as "anti-social" now when that's really not the case #LupusChat |
| Carly by Nature @SynceNerd_Carli @iveyjanette_207 @Lupus_Chat Welcome back to #LupusChat Ivey! |
| Carly by Nature @SynceNerd_Carli RT @iveyjanette_207: @Lupus_Chat Ivey Janette,Albuquerque. DX'D with SLE/lupus nephritis 1995. Favorite ice cream flavors are chocolate and chocolate chip. Yum yum. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. Having Lupus has definitely affected how people see me and interact with me, Which in turns affect how I interact with them and how much of myself I let them see. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. My fatigue and lack of energy has also affected how much I can do, and not many people in my life were able to adjust their expectations of me and what I can do. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. It took a while, but I got to the point where I could distant myself from people who can’t accept and be supportive of my new normal. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. Lupus is a mysterious and strange disease, and people don’t really know how to deal, knowing that you have it. And I don’t fault anyone for that. But I need to look out for me. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A1: @Lupus_Chat A1: Lupus has made me the "unreliable" friend. I'm usually unable to be social or communicate as often as I use to because I'm usually so tired or in pain. I'm seen as "anti-social" now when that's really not the case #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. I’ve definitely had friends invite me to things I clearly couldn’t do because I was so sick and get upset. They eventually stopped. And then kept not inviting me after I got better. #LupusChat |
 | 🤦🏼♀️ @harveythepig @Lupus_Chat Oops. Forgot #lupuschat |
| Carly by Nature @SynceNerd_Carli A1: Initially, my diagnosis had no real impact on my relationships (romantic or platonic). However through the years this has changed. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Inicialmente, mi diagnóstico no tuvo un impacto real en mis relaciones (romántico o platónico). Sin embargo, a través de los años, esto ha cambiado. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat a1 because i need more sleep than most people, staying up late when i have to work early isn't happening. so i miss out on socializing fri/sat with coworkers (outside of work hours). kinda stinks because they're the only ones i know here #lupuschat |
| Carly by Nature @SynceNerd_Carli A1: Lupus, certain medications, and the way I processed my diagnosis negatively impacted my relationship with my partner for a few years. I became bitter about things and didn’t handle my depression or mood swings well. This led me to mistreat her. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A1. I've lost friends because of being sick. I had a strained relationship with my family because they thought I was faking illness to get attention. I've been hesitant to get in long-term relationships because no one may want to be with me. #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat a1 because i need more sleep than most people, staying up late when i have to work early isn't happening. so i miss out on socializing fri/sat with coworkers (outside of work hours). kinda stinks because they're the only ones i know here #lupuschat |
| Carly by Nature @SynceNerd_Carli A1: El lupus, ciertos medicamentos y la forma en que procesé mi diagnóstico afectaron negativamente mi relación con mi pareja durante algunos años. Me enojé por las cosas y no manejé bien mi depresión o cambios de humor. Esto me llevó a maltratarla. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: Initially, my diagnosis had no real impact on my relationships (romantic or platonic). However through the years this has changed. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. Lupus is a mysterious and strange disease, and people don’t really know how to deal, knowing that you have it. And I don’t fault anyone for that. But I need to look out for me. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: Lupus, certain medications, and the way I processed my diagnosis negatively impacted my relationship with my partner for a few years. I became bitter about things and didn’t handle my depression or mood swings well. This led me to mistreat her. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: My relationships with certain friends have become a bit strained. Not being able to follow through on plans has a lot to do with that. After a while, I just stopped making plans with them altogether. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @_RachaelTV @Lupus_Chat @HaloTopCreamery Oh I absolutely do plan on eating the whole thing! #LupusChat lol |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A1. I've lost friends because of being sick. I had a strained relationship with my family because they thought I was faking illness to get attention. I've been hesitant to get in long-term relationships because no one may want to be with me. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Mis relaciones con ciertos amigos se han vuelto un poco tensas. No poder seguir con los planes tiene mucho que ver con eso. Después de un tiempo, simplemente dejé de hacer planes con ellos por completo. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. Lupus is a mysterious and strange disease, and people don’t really know how to deal, knowing that you have it. And I don’t fault anyone for that. But I need to look out for me. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: My relationship with my close family members has grown stronger. They check on me often and are supportive. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A1: A1: Initially, my diagnosis had no real impact on my relationships (romantic or platonic). However through the years this has changed. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat A1. I've lost friends because of being sick. I had a strained relationship with my family because they thought I was faking illness to get attention. I've been hesitant to get in long-term relationships because no one may want to be with me. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @_RachaelTV: @Lupus_Chat a1 because i need more sleep than most people, staying up late when i have to work early isn't happening. so i miss out on socializing fri/sat with coworkers (outside of work hours). kinda stinks because they're the only ones i know here #lupuschat |
| Carly by Nature @SynceNerd_Carli A1: Mi relación con mis familiares cercanos se ha fortalecido. Me controlan a menudo y me apoyan. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A1: A1: Lupus, certain medications, and the way I processed my diagnosis negatively impacted my relationship with my partner for a few years. I became bitter about things and didn’t handle my depression or mood swings well. This led me to mistreat her. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. I’ve definitely had friends invite me to things I clearly couldn’t do because I was so sick and get upset. They eventually stopped. And then kept not inviting me after I got better. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. My fatigue and lack of energy has also affected how much I can do, and not many people in my life were able to adjust their expectations of me and what I can do. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: My partner worries about me incredibly. I appreciate that she cares so much and is ALWAYS there for me, but I often shield some things from her because it triggers some of her own health complications. So I remain mindful of that when explaining certain things. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. Having Lupus has definitely affected how people see me and interact with me, Which in turns affect how I interact with them and how much of myself I let them see. #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A1: I lost my old friends, more than once, and made new friends who are understanding. Getting older helped! #lupuschat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @raquelonpurpose: @Lupus_Chat A1 : @Lupus_Chat A1 : My closest friends get me and are the best. I feel closer to people who also live with chronic illness.I haven't had any negative effects so far. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Mi pareja se preocupa por mí increíblemente. Aprecio que ella se preocupe mucho y SIEMPRE esté ahí para mí, pero a menudo le oculto algunas cosas porque desencadena algunas de sus propias complicaciones de salud. #LupusChat |
| #LupusChat @Lupus_Chat Retaining independence and autonomy over your life while balancing stable/unstable relationships with loved ones can be difficult. Let’s explore this more for Question 2. #LupusChat https://t.co/WrQwVIyoAm |
| RaquelRoschell @raquelonpurpose RT @iveyjanette_207: @Lupus_Chat A1. I've lost friends because of being sick. I had a strained relationship with my family because they thought I was faking illness to get attention. I've been hesitant to get in long-term relationships because no one may want to be with me. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Así que permanezco atento a eso al explicar ciertas cosas. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: In the last few years, our relationship has improved as I began working on handling my moods and illness better. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @SynceNerd_Carli @Lupus_Chat Barely getting home from work in time today. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: En los últimos años, nuestra relación ha mejorado a medida que comencé a trabajar mejor en mi estado de ánimo y en mi enfermedad. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @_RachaelTV: @Lupus_Chat a1 because i need more sleep than most people, staying up late when i have to work early isn't happening. so i miss out on socializing fri/sat with coworkers (outside of work hours). kinda stinks because they're the only ones i know here #lupuschat |
| Bri Montgomery @freetobeBri @Xtel007 This! I experienced this the most post lung involvement #LupusChat |
| #LupusChat @Lupus_Chat Q2: How can we set firm personal boundaries while balancing and building healthy relationships? #LupusChat https://t.co/e3WaE0A4xa |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @SynceNerd_Carli: A1: A1: Lupus, certain medications, and the way I processed my diagnosis negatively impacted my relationship with my partner for a few years. I became bitter about things and didn’t handle my depression or mood swings well. This led me to mistreat her. #LupusChat |
| Brian Vogel @bvogel9 @Lupus_Chat A1. #LupusChat i think at first it didn’t really impact my relationships with ppl. it took a long time for me to understand my limits and what i was able to do and not do. I would go out party a lot and drink. Which obviously isn’t good. But I’ve made my circle smaller |
| Carly by Nature @SynceNerd_Carli A1: As for friends, people I was closest to have been demoted to associates, with the exception of my high school best friend. He’s like a brother and is ALWAYS present for me. #LupusChat |
| #LupusChat @Lupus_Chat RT @bvogel9: @Lupus_Chat A1. #LupusChat i think at first it didn’t really impact my relationships with ppl. it took a long time for me to understand my limits and what i was able to do and not do. I would go out party a lot and drink. Which obviously isn’t good. But I’ve made my circle smaller |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @iveyjanette_207: @Lupus_Chat A1. I've lost friends because of being sick. I had a strained relationship with my family because they thought I was faking illness to get attention. I've been hesitant to get in long-term relationships because no one may want to be with me. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: My relationship with my close family members has grown stronger. They check on me often and are supportive. #LupusChat |
| #LupusChat @Lupus_Chat #LupusChat |
| #LupusChat @Lupus_Chat RT @sickysummie: A1: A1: I lost my old friends, more than once, and made new friends who are understanding. Getting older helped! #lupuschat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Retaining independence and autonomy over your life while balancing stable/unstable relationships with loved ones can be difficult. Let’s explore this more for Question 2. #LupusChat https://t.co/WrQwVIyoAm |
| 🤦🏼♀️ @harveythepig @Lupus_Chat I had a very serious boyfriend break up with me because of lupus. He couldn’t handle me being really sick. Then when I started getting better, he wanted to get back together. 😂 yeah right! #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @SynceNerd_Carli: A1: A1: My relationships with certain friends have become a bit strained. Not being able to follow through on plans has a lot to do with that. After a while, I just stopped making plans with them altogether. #LupusChat |
| #LupusChat @Lupus_Chat RT @harveythepig: @Lupus_Chat I had a very serious boyfriend break up with me because of lupus. He couldn’t handle me being really sick. Then when I started getting better, he wanted to get back together. 😂 yeah right! #LupusChat |
| #LupusChat @Lupus_Chat @jgriff100 Welcome to #LupusChat Jeanett! Thanks for joining. Remember to use #LupusChat in each tweet so the community can see your responses. 💜 https://t.co/dYfFBmjZcR |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @harveythepig: @Lupus_Chat I had a very serious boyfriend break up with me because of lupus. He couldn’t handle me being really sick. Then when I started getting better, he wanted to get back together. 😂 yeah right! #LupusChat |
| RaquelRoschell @raquelonpurpose RT @harveythepig: @Lupus_Chat I had a very serious boyfriend break up with me because of lupus. He couldn’t handle me being really sick. Then when I started getting better, he wanted to get back together. 😂 yeah right! #LupusChat |
| #LupusChat @Lupus_Chat Mantener la independencia y autonomía sobre su vida mientras se equilibran las relaciones estables / inestables con sus seres queridos puede ser difícil. Exploremos esto más para la Pregunta 2. #LupusChat https://t.co/jZt0eWCklh |
 | JL Napier @jgriff100 🤔I was miss diagnosed in 2010 a celiac they found the loop is into 2014 after a heart attack of my kidneys were attacked. If I were not lactose intolerant I probably like vanilla chocolate swirl #LupusChat |
| #LupusChat @Lupus_Chat Q2: Cómo podemos establecer límites personales firmes mientras equilibramos y construimos relaciones saludables? #LupusChat https://t.co/EeDpD0gnTG |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @bvogel9 @Lupus_Chat Same here. Smaller circle. But quality over quantity any day, you know? #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: @jgriff100 Welcome to #LupusChat Jeanett! Thanks for joining. Remember to use #LupusChat in each tweet so the community can see your responses. 💜 https://t.co/dYfFBmjZcR |
| Carly by Nature @SynceNerd_Carli A1: En cuanto a los amigos, la gente con la que estaba más cerca ha sido degradado a asociados, con la excepción de mi mejor amigo de la escuela secundaria. Es como un hermano y SIEMPRE está presente para mí. #LupusChat |
| #LupusChat @Lupus_Chat RT @jgriff100: 🤔I was miss diagnosed in 2010 a celiac they found the loop is into 2014 after a heart attack of my kidneys were attacked. If I were not lactose intolerant I probably like vanilla chocolate swirl #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Xtel007 @Lupus_Chat @HaloTopCreamery YASS! 😂😂 #lupuschat https://t.co/6ww6OEBmiF |
| Tiffany ⁷ @TiffanyAndLupus RT @jgriff100: 🤔I was miss diagnosed in 2010 a celiac they found the loop is into 2014 after a heart attack of my kidneys were attacked. If I were not lactose intolerant I probably like vanilla chocolate swirl #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: My relationship with members of the Lupus and chronic illness communities has grown tremendously. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Mi relación con los miembros de Lupus y las comunidades de enfermedades crónicas ha crecido enormemente. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Best of all, Lupus has brought me a great support system and incredible sisters in the #LupusChat team. I ride for @Tiffanyand Lupus, @CaringforLupus, and @Xtel007. |
| Carly by Nature @SynceNerd_Carli A1: Lo mejor de todo, Lupus me ha traído un gran sistema de apoyo y hermanas increíbles en el equipo #LupusChat. Yo monto para @TiffanyandLupus, @CaringforLupus y @Xtel007. |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @harveythepig @Lupus_Chat Pfffft people got some nerve! #LupusChat https://t.co/bPlrubkvfw |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q2: Q2: Cómo podemos establecer límites personales firmes mientras equilibramos y construimos relaciones saludables? #LupusChat https://t.co/EeDpD0gnTG |
| Carly by Nature @SynceNerd_Carli RT @harveythepig: @Lupus_Chat I had a very serious boyfriend break up with me because of lupus. He couldn’t handle me being really sick. Then when I started getting better, he wanted to get back together. 😂 yeah right! #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @bvogel9: @Lupus_Chat A1. #LupusChat i think at first it didn’t really impact my relationships with ppl. it took a long time for me to understand my limits and what i was able to do and not do. I would go out party a lot and drink. Which obviously isn’t good. But I’ve made my circle smaller |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q2: Q2: How can we set firm personal boundaries while balancing and building healthy relationships? #LupusChat https://t.co/e3WaE0A4xa |
| Tiffany ⁷ @TiffanyAndLupus A1: My health has definitely affected my personal relationships. Since my lupus diagnosis, there is this large space of distance between me and my loved ones. #LupusChat |
| Brian Vogel @bvogel9 @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. #LupusChat because my circle is smaller i know the people i hang with have a better idea of my disease and are way more understanding. Since I’ve been in a relationship I’ve seen my friends a lot less but that tends to happen as people age and move on with life’s journeys 💜 |
| Carly by Nature @SynceNerd_Carli A1: Lastly, my relationship with myself since diagnosis has been strained but has grown so much in the last year. I’m grateful for the lessons I’ve learned. I’m growing and it’s been both positively and negatively incredible. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Por último, mi relación conmigo misma desde el diagnóstico ha sido tensa, pero ha crecido tanto en el último año. Estoy agradecido por las lecciones que aprendí. Estoy creciendo y ha sido positiva y negativamente increíble. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @bvogel9: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. #LupusChat because my circle is smaller i know the people i hang with have a better idea of my disease and are way more understanding. Since I’ve been in a relationship I’ve seen my friends a lot less but that tends to happen as people age and move on with life’s journeys 💜 |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A1: A1: My health has definitely affected my personal relationships. Since my lupus diagnosis, there is this large space of distance between me and my loved ones. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2 I guess one thing I've done is given times where I won't do something. LIke if I have to be up at 2 (yes, I know #TVlife), then if something is after 4/5pm I'm out. No questions asked... it is limiting, however #lupuschat |
| Nae :) @heynaehey_ @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: We have to learn to let the toxic relationships go! Those who truly love & appreciate you understand those boundaries and will still continue to support you during your fight #LupusChat it just heartbreaking that you may lose people that have been in your life for years. |
| Carly by Nature @SynceNerd_Carli A2: This is often easier said than done. Relationships are hard work. This includes romantic, platonic, and familial relationships. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A1: I had some old friends who could either not stomach having a loved one who was terminally ill or ones who felt my new lifestyles no longer fit theirs so they faded away. #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: Esto a menudo es más fácil decirlo que hacerlo. Las relaciones son un trabajo duro. Esto incluye relaciones románticas, platónicas y familiares. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: Best of all, Lupus has brought me a great support system and incredible sisters in the #LupusChat team. I ride for @Tiffanyand Lupus, @CaringforLupus, and @Xtel007. |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q2: Q2: How can we set firm personal boundaries while balancing and building healthy relationships? #LupusChat https://t.co/e3WaE0A4xa |
| RaquelRoschell @raquelonpurpose A2 : Being clear about our boundaries with yourself. Know our own value so we can maintain them. Respect other's boundaries. Be transparent and truthful with people (and ourselves). #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: My health has definitely affected my personal relationships. Since my lupus diagnosis, there is this large space of distance between me and my loved ones. #LupusChat |
| 🤦🏼♀️ @harveythepig @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: I’ve learned to let people know right away about my health issues, and what that means as my reality. Sometimes this includes a “do you want to stick around knowing this?” addendum. If they’re still there, then starts the slow process of forming a relationship. #LupusChat |
| #LupusChat @Lupus_Chat RT @bvogel9: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. #LupusChat because my circle is smaller i know the people i hang with have a better idea of my disease and are way more understanding. Since I’ve been in a relationship I’ve seen my friends a lot less but that tends to happen as people age and move on with life’s journeys 💜 |
| Carly by Nature @SynceNerd_Carli A2: I think the key to building healthy relationships is deciding if having the relationship is worth the effort needed to sustain it. #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2 I guess one thing I've done is given times where I won't do something. LIke if I have to be up at 2 (yes, I know #TVlife), then if something is after 4/5pm I'm out. No questions asked... it is limiting, however #lupuschat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: We have to learn to let the toxic relationships go! Those who truly love & appreciate you understand those boundaries and will still continue to support you during your fight #LupusChat it just heartbreaking that you may lose people that have been in your life for years. |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: I had some old friends who could either not stomach having a loved one who was terminally ill or ones who felt my new lifestyles no longer fit theirs so they faded away. #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: A2 : A2 : Being clear about our boundaries with yourself. Know our own value so we can maintain them. Respect other's boundaries. Be transparent and truthful with people (and ourselves). #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: Creo que la clave para construir relaciones saludables es decidir si la relación vale la pena el esfuerzo necesario para mantenerla. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. Early on, I told my friends point blank that I don’t want them overly worrying and to keep their concerned hovering to a minimum. Lol #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: If you feel like you will be negatively impacted emotionally and mentally by interacting with a person, it is important to set a boundary. Sometimes this means severing ties with them. #LupusChat |
| #LupusChat @Lupus_Chat Lupus will almost certainly bring change to a relationship. It may be difficult for your loved one to understand what you are experiencing. We’ll discuss communication next! #LupusChat https://t.co/DhAZEQdWyD |
| #LupusChat @Lupus_Chat Q3: Are you likely to use verbal or non-verbal cues when communicating with others? What are some of your cues & how do your loved ones respond to them? #LupusChat https://t.co/z3zXaoc5Yd |
| Carly by Nature @SynceNerd_Carli A2: Si sientes que te afectarán emocional y mentalmente negativamente al interactuar con una persona, es importante establecer un límite. A veces esto significa cortar los lazos con ellos. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. For the most part, what I deal with is only my business. And I don’t let too many people in on that, not because I don’t want to worry them (although sometimes that’s why), but because it’s just not their business. #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: It is important to set firm boundaries and make your feelings known to the people in your life. If they cannot respect your boundaries then it is time to re-evaluate their place in your life. This has been a hard lesson for me. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. This sounds a bit counterintuitive to me wanting to open up more and let people know what it’s like to live with Lupus etc etc, but. I GET TO CHOOSE WHAT I SHARE AND WHEN. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q2: Q2: How can we set firm personal boundaries while balancing and building healthy relationships? #LupusChat https://t.co/e3WaE0A4xa |
| Tiffany ⁷ @TiffanyAndLupus RT @harveythepig: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: I’ve learned to let people know right away about my health issues, and what that means as my reality. Sometimes this includes a “do you want to stick around knowing this?” addendum. If they’re still there, then starts the slow process of forming a relationship. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A2: A2: I think the key to building healthy relationships is deciding if having the relationship is worth the effort needed to sustain it. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: A2 : A2 : Being clear about our boundaries with yourself. Know our own value so we can maintain them. Respect other's boundaries. Be transparent and truthful with people (and ourselves). #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. And this isn’t some SECRET I hide from my friends and loved ones or anything. It’s kind of my coping mechanism to deal with my situation. Some things, if I share them, I’ll need to add a whole explanation for folks to get it. And honestly who has the time/energy? #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @bvogel9: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. #LupusChat because my circle is smaller i know the people i hang with have a better idea of my disease and are way more understanding. Since I’ve been in a relationship I’ve seen my friends a lot less but that tends to happen as people age and move on with life’s journeys 💜 |
| Tiffany ⁷ @TiffanyAndLupus RT @bvogel9: @Lupus_Chat A1. #LupusChat i think at first it didn’t really impact my relationships with ppl. it took a long time for me to understand my limits and what i was able to do and not do. I would go out party a lot and drink. Which obviously isn’t good. But I’ve made my circle smaller |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. Boundaries are important, and TRUST is important. If you can’t just trust and believe me when I simply say I can’t, and I feel like I have to convince you that I’m not feeling well (which, I’m not about to do that), the relationship will not work. #LupusChat |
| #LupusChat @Lupus_Chat RT @harveythepig: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2: I’ve learned to let people know right away about my health issues, and what that means as my reality. Sometimes this includes a “do you want to stick around knowing this?” addendum. If they’re still there, then starts the slow process of forming a relationship. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: I think the key to building healthy relationships is deciding if having the relationship is worth the effort needed to sustain it. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A2. Early on, I told my friends point blank that I don’t want them overly worrying and to keep their concerned hovering to a minimum. Lol #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: If you feel like you will be negatively impacted emotionally and mentally by interacting with a person, it is important to set a boundary. Sometimes this means severing ties with them. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. Thankfully, most of my family/friends are always there for me, but know to leave me alone when I need it. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Lupus will almost certainly bring change to a relationship. It may be difficult for your loved one to understand what you are experiencing. We’ll discuss communication next! #LupusChat https://t.co/DhAZEQdWyD |
| #LupusChat @Lupus_Chat Lupus seguramente traerá cambio a una relación. Puede ser difícil para su ser querido entender lo que está experimentando. ¡Discutiremos la próxima comunicación! #LupusChat https://t.co/VSljk7msS7 |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. Dump relationships that are toxic. Including family members and significant others. Clean house. Stress the need to be loved unconditionally,illness or no illness. No pity parties. Ask for space when you need it. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Retaining independence and autonomy over your life while balancing stable/unstable relationships with loved ones can be difficult. Let’s explore this more for Question 2. #LupusChat https://t.co/WrQwVIyoAm |
| You cant fight the good fight if you're dead @sickysummie A2: I say no a lot and without apology. My body has hard limits that I have to respect. #lupuschat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @harveythepig: @Lupus_Chat I had a very serious boyfriend break up with me because of lupus. He couldn’t handle me being really sick. Then when I started getting better, he wanted to get back together. 😂 yeah right! #LupusChat |
 | Humor in Chaos @HumorInChaos #LupusChat Sorry I m late to the party. Sarah from Los Angeles. Fave ice cream is Chocolate with almonds. |
| #LupusChat @Lupus_Chat Q3: Usted usa probablemente use señales verbales o no verbales al comunicarse con los demás? Cuáles son algunas de sus pistas y cómo responden sus seres queridos? #LupusChat https://t.co/H7MZ4Vq6e2 |
| Brian Vogel @bvogel9 RT @Xtel007: A2. Boundaries are important, and TRUST is important. If you can’t just trust and believe me when I simply say I can’t, and I feel like I have to convince you that I’m not feeling well (which, I’m not about to do that), the relationship will not work. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. Dump relationships that are toxic. Including family members and significant others. Clean house. Stress the need to be loved unconditionally,illness or no illness. No pity parties. Ask for space when you need it. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Lupus will almost certainly bring change to a relationship. It may be difficult for your loved one to understand what you are experiencing. We’ll discuss communication next! #LupusChat https://t.co/DhAZEQdWyD |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q3: Q3: Are you likely to use verbal or non-verbal cues when communicating with others? What are some of your cues & how do your loved ones respond to them? #LupusChat https://t.co/z3zXaoc5Yd |
| Carly by Nature @SynceNerd_Carli A2: Es importante establecer límites firmes y dar a conocer tus sentimientos a las personas en tu vida. Si no pueden respetar sus límites, entonces es hora de volver a evaluar su lugar en su vida. Esta ha sido una dura lección para mí. #LupusChat |
| Humor in Chaos @HumorInChaos #LupusChat A1 All my relationships have been affected. Better - husband and kids, most friends. Worse - extended family like my mother. |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q3: Q3: Usted usa probablemente use señales verbales o no verbales al comunicarse con los demás? Cuáles son algunas de sus pistas y cómo responden sus seres queridos? #LupusChat https://t.co/H7MZ4Vq6e2 |
 | Yori @AnAmazingFeat RT @Lupus_Chat: 🎉Today's the day!! Join us at 3pm Eastern Time for our #LupusChat discussion on The Impact of Chronic Illness on Relationships! We'll examine how health affects our interactions with others. ⏰ Set those alarms and prep your snacks. 👇👇👇 https://t.co/Nsvn3pYAKs |
| You cant fight the good fight if you're dead @sickysummie A3: I use my words. But higher fatigue and pain are visible to those who know me. #lupuschat |
| Yori @AnAmazingFeat RT @Lupus_Chat: Lupus will almost certainly bring change to a relationship. It may be difficult for your loved one to understand what you are experiencing. We’ll discuss communication next! #LupusChat https://t.co/DhAZEQdWyD |
| Carly by Nature @SynceNerd_Carli @SarahNe40856484 No worries Sarah! Welcome to #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @sickysummie: A2: A2: I say no a lot and without apology. My body has hard limits that I have to respect. #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @iveyjanette_207: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. Dump relationships that are toxic. Including family members and significant others. Clean house. Stress the need to be loved unconditionally,illness or no illness. No pity parties. Ask for space when you need it. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A2. Thankfully, most of my family/friends are always there for me, but know to leave me alone when I need it. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A2. Boundaries are important, and TRUST is important. If you can’t just trust and believe me when I simply say I can’t, and I feel like I have to convince you that I’m not feeling well (which, I’m not about to do that), the relationship will not work. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A2. And this isn’t some SECRET I hide from my friends and loved ones or anything. It’s kind of my coping mechanism to deal with my situation. Some things, if I share them, I’ll need to add a whole explanation for folks to get it. And honestly who has the time/energy? #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A2. This sounds a bit counterintuitive to me wanting to open up more and let people know what it’s like to live with Lupus etc etc, but. I GET TO CHOOSE WHAT I SHARE AND WHEN. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q3: Q3: Are you likely to use verbal or non-verbal cues when communicating with others? What are some of your cues & how do your loved ones respond to them? #LupusChat https://t.co/z3zXaoc5Yd |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A2. Early on, I told my friends point blank that I don’t want them overly worrying and to keep their concerned hovering to a minimum. Lol #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A2. Thankfully, most of my family/friends are always there for me, but know to leave me alone when I need it. #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: I use a mixture of both. For the most part, my loved ones responds well to my verbal cues. But that is when I’m not being an asshole as I can sometimes be when frustrated. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: It is important to set firm boundaries and make your feelings known to the people in your life. If they cannot respect your boundaries then it is time to re-evaluate their place in your life. This has been a hard lesson for me. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A2. Dump relationships that are toxic. Including family members and significant others. Clean house. Stress the need to be loved unconditionally,illness or no illness. No pity parties. Ask for space when you need it. #LupusChat |
| #LupusChat @Lupus_Chat RT @sickysummie: A2: A2: I say no a lot and without apology. My body has hard limits that I have to respect. #lupuschat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q3: Q3: Are you likely to use verbal or non-verbal cues when communicating with others? What are some of your cues & how do your loved ones respond to them? #LupusChat https://t.co/z3zXaoc5Yd |
| Nae :) @heynaehey_ @Lupus_Chat A3: I use verbal, just so there isnt any miscommunication. I usually just tell it how it is and forewarn them how I may act. For instance, if I feel a flare... I send a mass text "hey, if you need me or it's an emergency call my husband, my phone is off" #LupusChat |
| #LupusChat @Lupus_Chat RT @sickysummie: A3: A3: I use my words. But higher fatigue and pain are visible to those who know me. #lupuschat |
| #LupusChat @Lupus_Chat RT @SarahNe40856484: #LupusChat A1 All my relationships have been affected. Better - husband and kids, most friends. Worse - extended family like my mother. |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A3: A3: I use a mixture of both. For the most part, my loved ones responds well to my verbal cues. But that is when I’m not being an asshole as I can sometimes be when frustrated. #LupusChat |
| 🤦🏼♀️ @harveythepig @Lupus_Chat A3: it depends. I don’t talk about it much when I’m in pain, etc. but some of the people I’m close to have learned to read my body language. Others, I’ve had to learn to verbally communicate my needs and pain to maintain a healthy relationship. #LupusChat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A3 : Both actually. If I am not feeling well enough to interact I get quiet and less physically affectionate or active. I have facial expressions as well😐😒.. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q3: Q3: Are you likely to use verbal or non-verbal cues when communicating with others? What are some of your cues & how do your loved ones respond to them? #LupusChat https://t.co/z3zXaoc5Yd |
| #LupusChat @Lupus_Chat @KalaLaMejor Hey there, Remember to use #LupusChat in each tweet so the community can see what you share. 💜 https://t.co/ezeO78tz4d |
| Nae :) @heynaehey_ @Lupus_Chat A3: For the most part they understand and it happens so often they are already prepared. #LupusChat |
| Humor in Chaos @HumorInChaos @Lupus_Chat #LupusChat A2 How I set boundaries, I use the word no as kindly but firmly as possible. I used to explain a lot. I stopped doing that. I owe no one an explanation. Exhausting and humiliating. I have enough to deal with. |
| #LupusChat @Lupus_Chat A3 #LupusChat 👇 https://t.co/f5S3RCTeTg |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A3. I’m doing a lot of effort with my verbal cues and being vocal about my wants, needs, feelings (ok not so great with the feelings one but I’m working on it). #LupusChat |
| Brian Vogel @bvogel9 @Lupus_Chat A3. #LupusChat I’m not likely to use verbal cues in the am. I’m not a morning person because 90% of the time i wake up in a lot of pain. I’d rather not hear a sound. I don’t like questions even if it’s how are u feeling? I’ll probably just give u the look like leave me alone gtfo |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A3. My best non-verbal cue is to just be quiet and stay by myself. Which probably doesn’t count as a “cue” loll. I’m not the best at going into details about how I feel, honestly. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A3: I won’t lie. I’m GUILTY of sending out “imaginary” or non-verbal clues to friends & family when I find it difficulty to communicate with my words. This often leads to my own frustration when they don’t understand what my needs are. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q3: Q3: Are you likely to use verbal or non-verbal cues when communicating with others? What are some of your cues & how do your loved ones respond to them? #LupusChat https://t.co/z3zXaoc5Yd |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A3 : If I'm at a conference or something I will sit in the back or off to the side if I am up for conversation. Friends will come check on me and then let me have my space. #LupusChat |
| JL Napier @jgriff100 @harveythepig @Lupus_Chat #LupusChat I had friend reach out and say I see your getting better call me...😐NOT |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Imaginary cues are my favorite lmao #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A3: I’ve some loved ones who can read my dysfunctional non-verbal cues 😭 For instance, shutting myself in my room from for hours, they’ll ask if I’m ok, in pain, & if I need medicine or food. Those moments when they GET IT are priceless. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: I use verbal, just so there isnt any miscommunication. I usually just tell it how it is and forewarn them how I may act. For instance, if I feel a flare... I send a mass text "hey, if you need me or it's an emergency call my husband, my phone is off" #LupusChat |
| #LupusChat @Lupus_Chat RT @harveythepig: @Lupus_Chat A3: @Lupus_Chat A3: it depends. I don’t talk about it much when I’m in pain, etc. but some of the people I’m close to have learned to read my body language. Others, I’ve had to learn to verbally communicate my needs and pain to maintain a healthy relationship. #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : Both actually. If I am not feeling well enough to interact I get quiet and less physically affectionate or active. I have facial expressions as well😐😒.. #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: Uso una mezcla de ambos. En general, mis seres queridos responden bien a mis señales verbales. Pero eso es cuando no estoy siendo un gilipollas, como a veces puedo ser cuando me siento frustrado. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: For the most part they understand and it happens so often they are already prepared. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A3. I’m doing a lot of effort with my verbal cues and being vocal about my wants, needs, feelings (ok not so great with the feelings one but I’m working on it). #LupusChat |
| #LupusChat @Lupus_Chat RT @bvogel9: @Lupus_Chat A3. #LupusChat I’m not likely to use verbal cues in the am. I’m not a morning person because 90% of the time i wake up in a lot of pain. I’d rather not hear a sound. I don’t like questions even if it’s how are u feeling? I’ll probably just give u the look like leave me alone gtfo |
| #LupusChat @Lupus_Chat RT @Xtel007: A3. My best non-verbal cue is to just be quiet and stay by myself. Which probably doesn’t count as a “cue” loll. I’m not the best at going into details about how I feel, honestly. #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: It’s harder for some of my loved ones to interpret my non-verbal cues but those closest to me generally sense when I’m not well in some capacity. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: I won’t lie. I’m GUILTY of sending out “imaginary” or non-verbal clues to friends & family when I find it difficulty to communicate with my words. This often leads to my own frustration when they don’t understand what my needs are. #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : If I'm at a conference or something I will sit in the back or off to the side if I am up for conversation. Friends will come check on me and then let me have my space. #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: Es más difícil para algunos de mis seres queridos interpretar mis señales no verbales, pero los más cercanos a mí generalmente perciben cuando no estoy bien de alguna manera. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: I’ve some loved ones who can read my dysfunctional non-verbal cues 😭 For instance, shutting myself in my room from for hours, they’ll ask if I’m ok, in pain, & if I need medicine or food. Those moments when they GET IT are priceless. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A3: A3: Uso una mezcla de ambos. En general, mis seres queridos responden bien a mis señales verbales. Pero eso es cuando no estoy siendo un gilipollas, como a veces puedo ser cuando me siento frustrado. #LupusChat |
| Bri Montgomery @freetobeBri RT @SynceNerd_Carli: A2: A2: I think the key to building healthy relationships is deciding if having the relationship is worth the effort needed to sustain it. #LupusChat |
| #LupusChat @Lupus_Chat It can be difficult to reconcile our pre-diagnosis independence with our new normal. In Question 4, we’ll examine ways to balance these aspects of our lives. #LupusChat https://t.co/5QNLVEFxrO |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A3: A3: I’ve some loved ones who can read my dysfunctional non-verbal cues 😭 For instance, shutting myself in my room from for hours, they’ll ask if I’m ok, in pain, & if I need medicine or food. Those moments when they GET IT are priceless. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: Imaginary cues are my favorite lmao #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @jgriff100: @harveythepig @Lupus_Chat #LupusChat I had friend reach out and say I see your getting better call me...😐NOT |
| Carly by Nature @SynceNerd_Carli RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : If I'm at a conference or something I will sit in the back or off to the side if I am up for conversation. Friends will come check on me and then let me have my space. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A3: A3: I won’t lie. I’m GUILTY of sending out “imaginary” or non-verbal clues to friends & family when I find it difficulty to communicate with my words. This often leads to my own frustration when they don’t understand what my needs are. #LupusChat |
| Humor in Chaos @HumorInChaos @Lupus_Chat #LupusChat A3 Verbal - definitely. Nonverbal- my husband is good at reading my body language and communicates with others around me. He points out my body cues for pain and stuff others miss. Btw, kids r all grown. Don't need me as much. |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A3. My best non-verbal cue is to just be quiet and stay by myself. Which probably doesn’t count as a “cue” loll. I’m not the best at going into details about how I feel, honestly. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @bvogel9: @Lupus_Chat A3. #LupusChat I’m not likely to use verbal cues in the am. I’m not a morning person because 90% of the time i wake up in a lot of pain. I’d rather not hear a sound. I don’t like questions even if it’s how are u feeling? I’ll probably just give u the look like leave me alone gtfo |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A3. I’m doing a lot of effort with my verbal cues and being vocal about my wants, needs, feelings (ok not so great with the feelings one but I’m working on it). #LupusChat |
| #LupusChat @Lupus_Chat Q4: With our increased need for reliance on others, how can we balance our desire to remain independent while also accepting help when it’s needed? #LupusChat https://t.co/97ZMf9MxJb |
| Carly by Nature @SynceNerd_Carli RT @SarahNe40856484: @Lupus_Chat #LupusChat A2 How I set boundaries, I use the word no as kindly but firmly as possible. I used to explain a lot. I stopped doing that. I owe no one an explanation. Exhausting and humiliating. I have enough to deal with. |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: For the most part they understand and it happens so often they are already prepared. #LupusChat |
| JL Napier @jgriff100 @missnaedotcom @Lupus_Chat #Lupuschat Im still figuring out the signs myself when I’m getting ready to flare. I’m a workaholic so I have a bit of a problem. I felt the flare coming on Friday and I’ve been down all weekend. |
| Carly by Nature @SynceNerd_Carli RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : Both actually. If I am not feeling well enough to interact I get quiet and less physically affectionate or active. I have facial expressions as well😐😒.. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @harveythepig: @Lupus_Chat A3: @Lupus_Chat A3: it depends. I don’t talk about it much when I’m in pain, etc. but some of the people I’m close to have learned to read my body language. Others, I’ve had to learn to verbally communicate my needs and pain to maintain a healthy relationship. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: I use verbal, just so there isnt any miscommunication. I usually just tell it how it is and forewarn them how I may act. For instance, if I feel a flare... I send a mass text "hey, if you need me or it's an emergency call my husband, my phone is off" #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q4: Q4: With our increased need for reliance on others, how can we balance our desire to remain independent while also accepting help when it’s needed? #LupusChat https://t.co/97ZMf9MxJb |
| Carly by Nature @SynceNerd_Carli RT @SarahNe40856484: @Lupus_Chat #LupusChat A3 Verbal - definitely. Nonverbal- my husband is good at reading my body language and communicates with others around me. He points out my body cues for pain and stuff others miss. Btw, kids r all grown. Don't need me as much. |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : If I'm at a conference or something I will sit in the back or off to the side if I am up for conversation. Friends will come check on me and then let me have my space. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A3: A3: It’s harder for some of my loved ones to interpret my non-verbal cues but those closest to me generally sense when I’m not well in some capacity. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A3. My best non-verbal cue is to just be quiet and stay by myself. Which probably doesn’t count as a “cue” loll. I’m not the best at going into details about how I feel, honestly. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @bvogel9: @Lupus_Chat A3. #LupusChat I’m not likely to use verbal cues in the am. I’m not a morning person because 90% of the time i wake up in a lot of pain. I’d rather not hear a sound. I don’t like questions even if it’s how are u feeling? I’ll probably just give u the look like leave me alone gtfo |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A3. I’m doing a lot of effort with my verbal cues and being vocal about my wants, needs, feelings (ok not so great with the feelings one but I’m working on it). #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: For the most part they understand and it happens so often they are already prepared. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : Both actually. If I am not feeling well enough to interact I get quiet and less physically affectionate or active. I have facial expressions as well😐😒.. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @harveythepig: @Lupus_Chat A3: @Lupus_Chat A3: it depends. I don’t talk about it much when I’m in pain, etc. but some of the people I’m close to have learned to read my body language. Others, I’ve had to learn to verbally communicate my needs and pain to maintain a healthy relationship. #LupusChat |
| #LupusChat @Lupus_Chat Puede ser difícil conciliar nuestra independencia de prediagnóstico con nuestra nueva normalidad. En la Pregunta 4, examinaremos formas de equilibrar estos aspectos de nuestras vidas. #LupusChat https://t.co/a1lJhYa8no |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A3. Most of the time it's a sad or painful look on my face. That's a cue for friends to give me space or help me with errands or medications. My mom would simply take a look and tell me to get rest. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: It can be difficult to reconcile our pre-diagnosis independence with our new normal. In Question 4, we’ll examine ways to balance these aspects of our lives. #LupusChat https://t.co/5QNLVEFxrO |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: It can be difficult to reconcile our pre-diagnosis independence with our new normal. In Question 4, we’ll examine ways to balance these aspects of our lives. #LupusChat https://t.co/5QNLVEFxrO |
| 🤦🏼♀️ @harveythepig @TiffanyAndLupus Guilty too 👋🏻 #LupusChat |
| #LupusChat @Lupus_Chat Q4: Con nuestra mayor necesidad de confiar en los demás, ¿cómo podemos equilibrar nuestro deseo de permanecer independientes al mismo tiempo que aceptamos ayuda cuando es necesaria? #LupusChat https://t.co/C8nfQHWVxc |
| #LupusChat @Lupus_Chat RT @SarahNe40856484: @Lupus_Chat #LupusChat A3 Verbal - definitely. Nonverbal- my husband is good at reading my body language and communicates with others around me. He points out my body cues for pain and stuff others miss. Btw, kids r all grown. Don't need me as much. |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q4: Q4: With our increased need for reliance on others, how can we balance our desire to remain independent while also accepting help when it’s needed? #LupusChat https://t.co/97ZMf9MxJb |
| Carly by Nature @SynceNerd_Carli RT @iveyjanette_207: @Lupus_Chat A3. Most of the time it's a sad or painful look on my face. That's a cue for friends to give me space or help me with errands or medications. My mom would simply take a look and tell me to get rest. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Puede ser difícil conciliar nuestra independencia de prediagnóstico con nuestra nueva normalidad. En la Pregunta 4, examinaremos formas de equilibrar estos aspectos de nuestras vidas. #LupusChat https://t.co/a1lJhYa8no |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q4: Q4: Con nuestra mayor necesidad de confiar en los demás, ¿cómo podemos equilibrar nuestro deseo de permanecer independientes al mismo tiempo que aceptamos ayuda cuando es necesaria? #LupusChat https://t.co/C8nfQHWVxc |
| RaquelRoschell @raquelonpurpose @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4 : I am so much better about accepting and asking for help. So much! Lord, I used to be hardheaded!! Now I'm good if you are able bodied enough to do it. I do what I can do and only push myself a little😉. #LupusChat |
| Nae :) @heynaehey_ @jgriff100 @Lupus_Chat Honestly it takes time to learn your body all over again after being diagnosed with lupus. I had to start journaling various things my body was going through and it took months and month of observing myself to figure it out. #LupusChat even now, I'm still learning |
| Carly by Nature @SynceNerd_Carli A4: It is in my nature to do things myself (My Virgo nature jumps OUT!). Relinquishing control is hard for me however since diagnosis, I’ve learned that I need some assistance with mundane tasks. #LupusChat |
| Bri Montgomery @freetobeBri A3 This is actually something I'm working on, but I'm trying to use more verbal. Close people can pick up on non verbal though. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Mi naturaleza es hacer las cosas yo mismo. Renunciar al control es difícil para mí, sin embargo, desde el diagnóstico, he aprendido que necesito ayuda con tareas mundanas. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: As I said before, I think it is important to set boundaries, but it is also important to share with others how they can help you manage parts of your life better. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Como dije antes, creo que es importante establecer límites, pero también es importante compartir con otros cómo pueden ayudarlo a manejar mejor partes de su vida. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A2: Setting boundaries is really important & sometimes those lines can blur because of our shift in dependence on others. It’s important we re-establish our needdor privacy and autonomy whenever we feel it’s necessary. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @jgriff100 @Lupus_Chat Honestly it takes time to learn your body all over again after being diagnosed with lupus. I had to start journaling various things my body was going through and it took months and month of observing myself to figure it out. #LupusChat even now, I'm still learning |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4 : @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4 : I am so much better about accepting and asking for help. So much! Lord, I used to be hardheaded!! Now I'm good if you are able bodied enough to do it. I do what I can do and only push myself a little😉. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A3. Most of the time it's a sad or painful look on my face. That's a cue for friends to give me space or help me with errands or medications. My mom would simply take a look and tell me to get rest. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q4: Q4: With our increased need for reliance on others, how can we balance our desire to remain independent while also accepting help when it’s needed? #LupusChat https://t.co/97ZMf9MxJb |
| #LupusChat @Lupus_Chat @cafedemendel Hey there Rocio, thanks for joining us today. Remember to use #LupusChat in each tweet so the community can see what you share. 💜 https://t.co/vNUp1dSMH4 |
| #LupusChat @Lupus_Chat A1 #LupusChat 👇 |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus a4 this is something i struggle with. i'm very independent right now (not necessarily by choice but kind of?) so I don't have many people/anyone to lean on if needed. thankfully that hasn't happened but close ... #lupuschat |
| RaquelRoschell @raquelonpurpose A3 : People who don't know me or acquaintances can get insecure or pushy if I want space from the group. #LupusChat |
| Brian Vogel @bvogel9 @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4 #LupusChat I’ve gotten much better at accepting help with little things. Like errands and I’m very blessed to have a family/bf that would literally do anything for me. I’m just stubborn and like my stuff a certain way. But every once in a while I’ll b like sure u can do that😂 |
| Tiffany ⁷ @TiffanyAndLupus A2: I like to begin with thanking someone for their help and letting them know their help is appreciated. Then, I kindly remind them of my personal space. We are allowed for aspects of our life to be private regardless of our health condition. #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: I'm still battling this! I still don't know when to ask for help... Sad thing is, I get mad if help isnt offered.. I assume people should be nice and offer help even when I dont ask... *sigh* I'm trying to get better! #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A4. I do my best to let my loved ones know when I need help or when I’m unable to do something that I usually can. But I tend to get easily frustrated (angry even) when I’m not believed, so sometimes I just don’t ask. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A4: A4: It is in my nature to do things myself (My Virgo nature jumps OUT!). Relinquishing control is hard for me however since diagnosis, I’ve learned that I need some assistance with mundane tasks. #LupusChat |
| #LupusChat @Lupus_Chat RT @freetobeBri: A3 This is actually something I'm working on, but I'm trying to use more verbal. Close people can pick up on non verbal though. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A4: A4: As I said before, I think it is important to set boundaries, but it is also important to share with others how they can help you manage parts of your life better. #LupusChat |
| Bri Montgomery @freetobeBri A4 This is the hardest for me by far. I have learned to be honest with myself and adjust expectations based on the new me and get help when needed. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @jgriff100 @missnaedotcom @Lupus_Chat i'm the same way... and i've had lupus 9 years. the symptoms can change and your tolerance to life can change too. it's crazy. hope you feel better soon! #LupusChat |
| Humor in Chaos @HumorInChaos @Lupus_Chat #LupusChat A4 Those near me a lot have gotten used to letting me decide what I can/can't do at any given moment. The prob is others (mother) who try to "fix" me by infantilizing me. That us a real prob. I have no solution except firm boundaries. |
| RaquelRoschell @raquelonpurpose RT @SynceNerd_Carli: A4: A4: It is in my nature to do things myself (My Virgo nature jumps OUT!). Relinquishing control is hard for me however since diagnosis, I’ve learned that I need some assistance with mundane tasks. #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A4: I'm less bad at asking for help. Honestly, though, I go without a lot because no one can or wants to help. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus A3: Since I tend to become ore non-verbal when I’m not feeling well, I try to communicate my needs more when I’m doing well so this way loved ones can recognize a need when I’m not being as vocal as I usually am. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A2: A2: Setting boundaries is really important & sometimes those lines can blur because of our shift in dependence on others. It’s important we re-establish our needdor privacy and autonomy whenever we feel it’s necessary. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A4. In terms of my energy levels, I’m learning to manage my tasks and prioritize, and delegate when needed. And I remind myself daily, that needing assistance doesn’t make me a failure. #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus a4 this is something i struggle with. i'm very independent right now (not necessarily by choice but kind of?) so I don't have many people/anyone to lean on if needed. thankfully that hasn't happened but close ... #lupuschat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: A3 : A3 : People who don't know me or acquaintances can get insecure or pushy if I want space from the group. #LupusChat |
| 🤦🏼♀️ @harveythepig @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: it took me a long time to just be able to ask for help. After well over a decade of serious illness, I still have a hard time. For me, it’s been “how do I ask for and accept help in THIS environment?” /1 #LupusChat |
| #LupusChat @Lupus_Chat RT @bvogel9: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4 #LupusChat I’ve gotten much better at accepting help with little things. Like errands and I’m very blessed to have a family/bf that would literally do anything for me. I’m just stubborn and like my stuff a certain way. But every once in a while I’ll b like sure u can do that😂 |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A2: A2: I like to begin with thanking someone for their help and letting them know their help is appreciated. Then, I kindly remind them of my personal space. We are allowed for aspects of our life to be private regardless of our health condition. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: I'm still battling this! I still don't know when to ask for help... Sad thing is, I get mad if help isnt offered.. I assume people should be nice and offer help even when I dont ask... *sigh* I'm trying to get better! #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A4. I do my best to let my loved ones know when I need help or when I’m unable to do something that I usually can. But I tend to get easily frustrated (angry even) when I’m not believed, so sometimes I just don’t ask. #LupusChat |
| #LupusChat @Lupus_Chat RT @freetobeBri: A4 This is the hardest for me by far. I have learned to be honest with myself and adjust expectations based on the new me and get help when needed. #LupusChat |
| #LupusChat @Lupus_Chat RT @SarahNe40856484: @Lupus_Chat #LupusChat A4 Those near me a lot have gotten used to letting me decide what I can/can't do at any given moment. The prob is others (mother) who try to "fix" me by infantilizing me. That us a real prob. I have no solution except firm boundaries. |
| #LupusChat @Lupus_Chat RT @sickysummie: A4: A4: I'm less bad at asking for help. Honestly, though, I go without a lot because no one can or wants to help. #lupuschat |
| Nae :) @heynaehey_ @LupusLostDoctor @Lupus_Chat Exactly!!!! I've lost friends because they think I'm "changing"... smh. No.. I'm just fighting for my life here! #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @harveythepig: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: it took me a long time to just be able to ask for help. After well over a decade of serious illness, I still have a hard time. For me, it’s been “how do I ask for and accept help in THIS environment?” /1 #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A4. In terms of my energy levels, I’m learning to manage my tasks and prioritize, and delegate when needed. And I remind myself daily, that needing assistance doesn’t make me a failure. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: Since I tend to become ore non-verbal when I’m not feeling well, I try to communicate my needs more when I’m doing well so this way loved ones can recognize a need when I’m not being as vocal as I usually am. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @raquelonpurpose i hate that! #lupuschat |
| #LupusChat @Lupus_Chat RT @harveythepig: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: it took me a long time to just be able to ask for help. After well over a decade of serious illness, I still have a hard time. For me, it’s been “how do I ask for and accept help in THIS environment?” /1 #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A3: A3: Since I tend to become ore non-verbal when I’m not feeling well, I try to communicate my needs more when I’m doing well so this way loved ones can recognize a need when I’m not being as vocal as I usually am. #LupusChat |
| #LupusChat @Lupus_Chat It seems maintaining existing relationships can sometimes be tough. Let’s focus on making new connections for Question 5. #LupusChat https://t.co/OIxoHN8QFa |
| #LupusChat @Lupus_Chat Q5: Are you open to building new (platonic/romantic) relationships since learning of your diagnosis? When do you feel is the right time to disclose sensitive information about yourself to romantic prospects? #LupusChat https://t.co/KtkCGovjtQ |
| RaquelRoschell @raquelonpurpose RT @TiffanyAndLupus: A2: A2: Setting boundaries is really important & sometimes those lines can blur because of our shift in dependence on others. It’s important we re-establish our needdor privacy and autonomy whenever we feel it’s necessary. #LupusChat |
| 🤦🏼♀️ @harveythepig @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: Help at home is very different for me that help at work. I’ve taught kids/ young adults with severe autism for over a decade and I’m confident in my job. I loved my team and they could read me like a book. They knew when I needed help, but I hated asking./2 #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @LupusLostDoctor @Lupus_Chat Exactly!!!! I've lost friends because they think I'm "changing"... smh. No.. I'm just fighting for my life here! #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: It seems maintaining existing relationships can sometimes be tough. Let’s focus on making new connections for Question 5. #LupusChat https://t.co/OIxoHN8QFa |
| #LupusChat @Lupus_Chat Parece que mantener relaciones existentes a veces puede ser difícil. Vamos a centrarnos en hacer nuevas conexiones para la Pregunta 5. #LupusChat https://t.co/RTJTG0dUvo |
| #LupusChat @Lupus_Chat RT @harveythepig: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: Help at home is very different for me that help at work. I’ve taught kids/ young adults with severe autism for over a decade and I’m confident in my job. I loved my team and they could read me like a book. They knew when I needed help, but I hated asking./2 #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @TiffanyAndLupus: A3: A3: Since I tend to become ore non-verbal when I’m not feeling well, I try to communicate my needs more when I’m doing well so this way loved ones can recognize a need when I’m not being as vocal as I usually am. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q5: Q5: Are you open to building new (platonic/romantic) relationships since learning of your diagnosis? When do you feel is the right time to disclose sensitive information about yourself to romantic prospects? #LupusChat https://t.co/KtkCGovjtQ |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A4. In terms of my energy levels, I’m learning to manage my tasks and prioritize, and delegate when needed. And I remind myself daily, that needing assistance doesn’t make me a failure. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: It seems maintaining existing relationships can sometimes be tough. Let’s focus on making new connections for Question 5. #LupusChat https://t.co/OIxoHN8QFa |
| Tiffany ⁷ @TiffanyAndLupus RT @missnaedotcom: @LupusLostDoctor @Lupus_Chat Exactly!!!! I've lost friends because they think I'm "changing"... smh. No.. I'm just fighting for my life here! #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @missnaedotcom: @LupusLostDoctor @Lupus_Chat Exactly!!!! I've lost friends because they think I'm "changing"... smh. No.. I'm just fighting for my life here! #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @sickysummie: A4: A4: I'm less bad at asking for help. Honestly, though, I go without a lot because no one can or wants to help. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @SarahNe40856484: @Lupus_Chat #LupusChat A4 Those near me a lot have gotten used to letting me decide what I can/can't do at any given moment. The prob is others (mother) who try to "fix" me by infantilizing me. That us a real prob. I have no solution except firm boundaries. |
| Tiffany ⁷ @TiffanyAndLupus RT @freetobeBri: A4 This is the hardest for me by far. I have learned to be honest with myself and adjust expectations based on the new me and get help when needed. #LupusChat |
| #LupusChat @Lupus_Chat Q5: Está usted abierto a construir nuevas relaciones (platónicas / románticas) desde que conoces tu diagnóstico? Cuándo cree que es el momento adecuado para compartir información sensible sobre usted a prospectos románticos? #LupusChat https://t.co/dKD9EB5rvX |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q4: Q4: With our increased need for reliance on others, how can we balance our desire to remain independent while also accepting help when it’s needed? #LupusChat https://t.co/97ZMf9MxJb |
| Nae :) @heynaehey_ @Lupus_Chat A5: I told my then boyfriend (now husband) right away! Told him some days I may not be available, told him I may cant do what most people our age do, mentioned I may hospitalized some days and I let him make the choice of if he still wanted to be with me or not #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Perhaps, explain the transition chronic illness has caused you to undergo to your loved ones. Using both verbal and non-verbal cues, help them understand how to assist you while allowing you to choose when their help is wanted. #LupusChat |
| 🤦🏼♀️ @harveythepig @Lupus_Chat @TiffanyAndLupus A4: asking for help with a student when I was in excruciating pain or exhausted was just so difficult because I didn’t want to step back and accept my limits. It’s easier at home. I’m much more willing to give up housework 😂 /3 #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Quizás, explique la transición que las enfermedades crónicas causaron a sus seres queridos. Usando señales verbales y no verbales, ayúdelos a entender cómo ayudarlo, al tiempo que le permite elegir cuándo se necesita ayuda. #LupusChat |
| Brian Vogel @bvogel9 @Lupus_Chat A5 #LupusChat i didn’t really disclose info to @MarraScott for a little bit i don’t remember exactly how long i waited. But i don’t think my illness really stops me from meeting new people or making friends. I just pick and choose what I’m able to do. I think I’m quite social 😊. |
| Tiffany ⁷ @TiffanyAndLupus A4: We should remind ourselves as often as we can that our health & or increased need of reliance on loved doesn’t negate our independence. We should ask for help when we need it without fear or worry that we’re losing autonomy. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q5: Q5: Are you open to building new (platonic/romantic) relationships since learning of your diagnosis? When do you feel is the right time to disclose sensitive information about yourself to romantic prospects? #LupusChat https://t.co/KtkCGovjtQ |
| Carly by Nature @SynceNerd_Carli RT @harveythepig: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4: Help at home is very different for me that help at work. I’ve taught kids/ young adults with severe autism for over a decade and I’m confident in my job. I loved my team and they could read me like a book. They knew when I needed help, but I hated asking./2 #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Parece que mantener relaciones existentes a veces puede ser difícil. Vamos a centrarnos en hacer nuevas conexiones para la Pregunta 5. #LupusChat https://t.co/RTJTG0dUvo |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q5: Q5: Está usted abierto a construir nuevas relaciones (platónicas / románticas) desde que conoces tu diagnóstico? Cuándo cree que es el momento adecuado para compartir información sensible sobre usted a prospectos románticos? #LupusChat https://t.co/dKD9EB5rvX |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A5: @Lupus_Chat A5: I told my then boyfriend (now husband) right away! Told him some days I may not be available, told him I may cant do what most people our age do, mentioned I may hospitalized some days and I let him make the choice of if he still wanted to be with me or not #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A4: A4: We should remind ourselves as often as we can that our health & or increased need of reliance on loved doesn’t negate our independence. We should ask for help when we need it without fear or worry that we’re losing autonomy. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q5: Q5: Are you open to building new (platonic/romantic) relationships since learning of your diagnosis? When do you feel is the right time to disclose sensitive information about yourself to romantic prospects? #LupusChat https://t.co/KtkCGovjtQ |
| You cant fight the good fight if you're dead @sickysummie A5: Oh yeah, love new friends! I tell everyone right away and "I have lupus" is in my dating profile. Cause my health is a full time job. #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @bvogel9: @Lupus_Chat A5 #LupusChat i didn’t really disclose info to @MarraScott for a little bit i don’t remember exactly how long i waited. But i don’t think my illness really stops me from meeting new people or making friends. I just pick and choose what I’m able to do. I think I’m quite social 😊. |
| Carly by Nature @SynceNerd_Carli RT @harveythepig: @Lupus_Chat @TiffanyAndLupus A4: @Lupus_Chat @TiffanyAndLupus A4: asking for help with a student when I was in excruciating pain or exhausted was just so difficult because I didn’t want to step back and accept my limits. It’s easier at home. I’m much more willing to give up housework 😂 /3 #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4. I've become better at knowing when to ask for help rather than try to be a superwoman like I was before my DX. I often feel embarrassed asking for help,especially since I live alone. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A5. I am definitely up to building new relationships. Sometimes as this girl that just happens to have Lupus, and sometimes as just “this girl”. It really depends on our connection when (if at all) I decide to open up about my diagnosis/symptoms. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: My desire to make new friends can be fleeting. Sometimes I want to and sometimes I don’t want to be bothered. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: Mi deseo de hacer nuevos amigos puede ser fugaz. A veces quiero y a veces no quiero que me molesten. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A5. My life is not on pause while I deal with Lupus, and I intend to live it fully, friendships, relationships (romantic and professional) and all. I just adjust and reprioritize some things. #LupusChat |
| Humor in Chaos @HumorInChaos #LupusChat A5 I need to stay away from the romantic aspect of this question or my husband will not be very happy with me. 😄😏 New friends, everyone catches on something is wrong. May as well let them in on it. But no details. Save those for close friends. |
| Tiffany ⁷ @TiffanyAndLupus A4: I get frustrated all the debating my dependence-independence living with a chronic illness. Probably even more so because I live in a country that does not respect or prioritize the disabled or our needs. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: I don’t feel like I NEED new friends but if I meet someone and we connect then I may be receptive to it. My energy may be better used elsewhere. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A4: A4: I get frustrated all the debating my dependence-independence living with a chronic illness. Probably even more so because I live in a country that does not respect or prioritize the disabled or our needs. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat a5 I can't remember how I revealed it last time. it was probably nonchalant and over time I kept sharing more info about it or on bad days blaming "the lupus" when I feel less than good. not sure how i would discuss it now #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A5: @Lupus_Chat A5: I told my then boyfriend (now husband) right away! Told him some days I may not be available, told him I may cant do what most people our age do, mentioned I may hospitalized some days and I let him make the choice of if he still wanted to be with me or not #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: No siento que NECESITO nuevos amigos, pero si me encuentro con alguien y nos conectamos, puedo ser receptivo. Mi energía puede ser mejor utilizada en otros lugares. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A4: A4: Perhaps, explain the transition chronic illness has caused you to undergo to your loved ones. Using both verbal and non-verbal cues, help them understand how to assist you while allowing you to choose when their help is wanted. #LupusChat |
| #LupusChat @Lupus_Chat RT @harveythepig: @Lupus_Chat @TiffanyAndLupus A4: @Lupus_Chat @TiffanyAndLupus A4: asking for help with a student when I was in excruciating pain or exhausted was just so difficult because I didn’t want to step back and accept my limits. It’s easier at home. I’m much more willing to give up housework 😂 /3 #LupusChat |
| #LupusChat @Lupus_Chat RT @bvogel9: @Lupus_Chat A5 #LupusChat i didn’t really disclose info to @MarraScott for a little bit i don’t remember exactly how long i waited. But i don’t think my illness really stops me from meeting new people or making friends. I just pick and choose what I’m able to do. I think I’m quite social 😊. |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: We should remind ourselves as often as we can that our health & or increased need of reliance on loved doesn’t negate our independence. We should ask for help when we need it without fear or worry that we’re losing autonomy. #LupusChat |
| #LupusChat @Lupus_Chat RT @sickysummie: A5: A5: Oh yeah, love new friends! I tell everyone right away and "I have lupus" is in my dating profile. Cause my health is a full time job. #lupuschat |
| Carly by Nature @SynceNerd_Carli A5: My partner and I were already together for 5 years when I was diagnosed. So I didn’t have to disclose so close to meeting her. I know it’s more difficult for singles. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4. I've become better at knowing when to ask for help rather than try to be a superwoman like I was before my DX. I often feel embarrassed asking for help,especially since I live alone. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A5. I am definitely up to building new relationships. Sometimes as this girl that just happens to have Lupus, and sometimes as just “this girl”. It really depends on our connection when (if at all) I decide to open up about my diagnosis/symptoms. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: My desire to make new friends can be fleeting. Sometimes I want to and sometimes I don’t want to be bothered. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: Mi pareja y yo ya estábamos juntos durante 5 años cuando me diagnosticaron. Así que no tuve que revelar tan cerca de conocerla. Sé que es más difícil para los solteros. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A5. My life is not on pause while I deal with Lupus, and I intend to live it fully, friendships, relationships (romantic and professional) and all. I just adjust and reprioritize some things. #LupusChat |
| #LupusChat @Lupus_Chat RT @SarahNe40856484: #LupusChat A5 I need to stay away from the romantic aspect of this question or my husband will not be very happy with me. 😄😏 New friends, everyone catches on something is wrong. May as well let them in on it. But no details. Save those for close friends. |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: I get frustrated all the debating my dependence-independence living with a chronic illness. Probably even more so because I live in a country that does not respect or prioritize the disabled or our needs. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: I don’t feel like I NEED new friends but if I meet someone and we connect then I may be receptive to it. My energy may be better used elsewhere. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: La comunicación puede ser frustrante y bastante compleja al mismo tiempo que manejamos con enfermedades crónicas. #LupusChat https://t.co/VAc0TO3o5o |
| #LupusChat @Lupus_Chat Stay tuned, our last question is up next! #LupusChat https://t.co/4DzDnEeKTO |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat a5 I can't remember how I revealed it last time. it was probably nonchalant and over time I kept sharing more info about it or on bad days blaming "the lupus" when I feel less than good. not sure how i would discuss it now #LupusChat |
| #LupusChat @Lupus_Chat Q6: How best can we help our loved ones understand our the complexity of our health and what we experience on a daily basis? #LupusChat https://t.co/FuzTlg1F1R |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4. I've become better at knowing when to ask for help rather than try to be a superwoman like I was before my DX. I often feel embarrassed asking for help,especially since I live alone. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @harveythepig: @Lupus_Chat @TiffanyAndLupus A4: @Lupus_Chat @TiffanyAndLupus A4: asking for help with a student when I was in excruciating pain or exhausted was just so difficult because I didn’t want to step back and accept my limits. It’s easier at home. I’m much more willing to give up housework 😂 /3 #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A4: A4: Perhaps, explain the transition chronic illness has caused you to undergo to your loved ones. Using both verbal and non-verbal cues, help them understand how to assist you while allowing you to choose when their help is wanted. #LupusChat |
 | isolda cardozo @isoldacall RT @Lupus_Chat: La comunicación puede ser frustrante y bastante compleja al mismo tiempo que manejamos con enfermedades crónicas. #LupusChat https://t.co/VAc0TO3o5o |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @SynceNerd_Carli this is a whole mood. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @iveyjanette_207: @Lupus_Chat @TiffanyAndLupus @AgainstLupus @SynceNerd_Carli @Xtel007 @CaringForLupus A4. I've become better at knowing when to ask for help rather than try to be a superwoman like I was before my DX. I often feel embarrassed asking for help,especially since I live alone. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: It seems maintaining existing relationships can sometimes be tough. Let’s focus on making new connections for Question 5. #LupusChat https://t.co/OIxoHN8QFa |
| #LupusChat @Lupus_Chat Estén atentos, nuestra última pregunta está próxima! #LupusChat https://t.co/EvWJdtQHn3 |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q5: Q5: Are you open to building new (platonic/romantic) relationships since learning of your diagnosis? When do you feel is the right time to disclose sensitive information about yourself to romantic prospects? #LupusChat https://t.co/KtkCGovjtQ |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A5. At this time,no. I ended a long-term relationship and engagement 2 years before my DX. It broke my heart. I got back with an ex after my DX. It ended after 4 years. My last engagement ended 7 years ago. Lupus didn't help things. #LupusChat |
 | Carlito Brigante @Antibobo RT @Lupus_Chat: La comunicación puede ser frustrante y bastante compleja al mismo tiempo que manejamos con enfermedades crónicas. #LupusChat https://t.co/VAc0TO3o5o |
| #LupusChat @Lupus_Chat Q6: Cómo podemos ayudar a nuestros seres queridos a comprender nuestra complejidad de nuestra salud y lo que experimentamos a diario? #LupusChat https://t.co/290RfYXTVc |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A5 I am open to a romantic relationship. Its my old hurts and stuff I need to work out first. I am upfront about my illness. I am an active advocate - no other choice but to be upfront. #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A6 I invited my closest family and friends to my lupus support groups! Sometimes hearing it from other people help. I bring them so they can they can get educated and see that others are battling this too... I'm just not making this stuff up that we go through. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Stay tuned, our last question is up next! #LupusChat https://t.co/4DzDnEeKTO |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q6: Q6: How best can we help our loved ones understand our the complexity of our health and what we experience on a daily basis? #LupusChat https://t.co/FuzTlg1F1R |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q6: Q6: How best can we help our loved ones understand our the complexity of our health and what we experience on a daily basis? #LupusChat https://t.co/FuzTlg1F1R |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q6: Q6: Cómo podemos ayudar a nuestros seres queridos a comprender nuestra complejidad de nuestra salud y lo que experimentamos a diario? #LupusChat https://t.co/290RfYXTVc |
| Carly by Nature @SynceNerd_Carli RT @iveyjanette_207: @Lupus_Chat A5. At this time,no. I ended a long-term relationship and engagement 2 years before my DX. It broke my heart. I got back with an ex after my DX. It ended after 4 years. My last engagement ended 7 years ago. Lupus didn't help things. #LupusChat |
| 🤦🏼♀️ @harveythepig @Xtel007 That’s been hard for me too. I’m so naturally independent that feeling even slightly dependent on others makes me feel like I’ve failed. #LupusChat |
| You cant fight the good fight if you're dead @sickysummie RT @Xtel007: A5. My life is not on pause while I deal with Lupus, and I intend to live it fully, friendships, relationships (romantic and professional) and all. I just adjust and reprioritize some things. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @_RachaelTV: @Lupus_Chat a5 I can't remember how I revealed it last time. it was probably nonchalant and over time I kept sharing more info about it or on bad days blaming "the lupus" when I feel less than good. not sure how i would discuss it now #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A4: A4: I get frustrated all the debating my dependence-independence living with a chronic illness. Probably even more so because I live in a country that does not respect or prioritize the disabled or our needs. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @SarahNe40856484: #LupusChat A5 I need to stay away from the romantic aspect of this question or my husband will not be very happy with me. 😄😏 New friends, everyone catches on something is wrong. May as well let them in on it. But no details. Save those for close friends. |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Para cada pregunta de dos partes, asegúrese de agregar Q1A o A1B antes de cada una de sus respuestas. #LupusChat https://t.co/aE3ubkgbhh |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A5. My life is not on pause while I deal with Lupus, and I intend to live it fully, friendships, relationships (romantic and professional) and all. I just adjust and reprioritize some things. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A5. I am definitely up to building new relationships. Sometimes as this girl that just happens to have Lupus, and sometimes as just “this girl”. It really depends on our connection when (if at all) I decide to open up about my diagnosis/symptoms. #LupusChat |
 | human. @wittygene_ RT @missnaedotcom: @LupusLostDoctor @Lupus_Chat Exactly!!!! I've lost friends because they think I'm "changing"... smh. No.. I'm just fighting for my life here! #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A6 I invited my closest family and friends to my lupus support groups! Sometimes hearing it from other people help. I bring them so they can they can get educated and see that others are battling this too... I'm just not making this stuff up that we go through. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @raquelonpurpose: @Lupus_Chat A5 I am open to a romantic relationship. Its my old hurts and stuff I need to work out first. I am upfront about my illness. I am an active advocate - no other choice but to be upfront. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Q1: Q1: Cómo ha afectado el Lupus y /o la enfermedad crónica sus relaciones con los demás? #LupusChat https://t.co/0WtiVQMEY2 |
| Carly by Nature @SynceNerd_Carli A6: We have to communicate with them the best way we know how. Whatever works for the type of relationship you have, Do that! #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A5: I’m always open to the idea of new friendships, though I’m also wary to make sure it’s not one that’s harmful or demanding on either my body or mental space. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Mantener la independencia y autonomía sobre su vida mientras se equilibran las relaciones estables / inestables con sus seres queridos puede ser difícil. Exploremos esto más para la Pregunta 2. #LupusChat https://t.co/jZt0eWCklh |
| RaquelRoschell @raquelonpurpose @missnaedotcom @Lupus_Chat A5 : I enjoy meeting, connecting and building relationships with people. I habe never been to let just any and everybody in my personal space. Oh hell no. I am respectful but selective. #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Tenemos que comunicarnos con ellos de la mejor manera que sabemos cómo hacerlo. Lo que sea que funcione para el tipo de relación que tienes, haz eso! #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Provide them with information on your illness and its side effects. Do the same with medication so they know the side effects and how that affects you daily. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A6. Explain as best as possible. Give them books and literature on lupus. Invite them to your doctor's appointments and support groups. That breaks the ice. Let them ask questions. #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Bríndeles información sobre su enfermedad y sus efectos secundarios. Haz lo mismo con la medicación para que sepan los efectos secundarios y cómo eso te afecta a diario. #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Let them know that sometimes you will use non-verbal cues and that they should be attentive. #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Hágales saber que a veces usará señales no verbales y que deben estar atentos. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q6: Q6: How best can we help our loved ones understand our the complexity of our health and what we experience on a daily basis? #LupusChat https://t.co/FuzTlg1F1R |
| Nae :) @heynaehey_ @iveyjanette_207 @Lupus_Chat Do you think lupus was the reason your relationships ended or it was just apart of a bigger problem?😔 #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. The biggest ways obviously are education and communication. Educate your loved ones on what Lupus is and how it affects our bodies and quality of lives. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. Use resources, including and especially first hand account from people who have Lupus. And use your own experience, communicate how Lupus affects you personally. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A5: Ahhh dating! It’s definitely challenging when you live with a chronic illness or disability. I think perhaps it depends on the character and morals of the person in question. It can be disappointing when faced with ableist assholes in the dating scene. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A5: A5: Ahhh dating! It’s definitely challenging when you live with a chronic illness or disability. I think perhaps it depends on the character and morals of the person in question. It can be disappointing when faced with ableist assholes in the dating scene. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: My partner and I were already together for 5 years when I was diagnosed. So I didn’t have to disclose so close to meeting her. I know it’s more difficult for singles. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A5. At this time,no. I ended a long-term relationship and engagement 2 years before my DX. It broke my heart. I got back with an ex after my DX. It ended after 4 years. My last engagement ended 7 years ago. Lupus didn't help things. #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A5 I am open to a romantic relationship. Its my old hurts and stuff I need to work out first. I am upfront about my illness. I am an active advocate - no other choice but to be upfront. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A6 I invited my closest family and friends to my lupus support groups! Sometimes hearing it from other people help. I bring them so they can they can get educated and see that others are battling this too... I'm just not making this stuff up that we go through. #LupusChat |
| You cant fight the good fight if you're dead @sickysummie RT @Xtel007: A6. The biggest ways obviously are education and communication. Educate your loved ones on what Lupus is and how it affects our bodies and quality of lives. #LupusChat |
| #LupusChat @Lupus_Chat RT @harveythepig: @Xtel007 That’s been hard for me too. I’m so naturally independent that feeling even slightly dependent on others makes me feel like I’ve failed. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A5: A5: I’m always open to the idea of new friendships, though I’m also wary to make sure it’s not one that’s harmful or demanding on either my body or mental space. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: We have to communicate with them the best way we know how. Whatever works for the type of relationship you have, Do that! #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @missnaedotcom @Lupus_Chat A5 : @missnaedotcom @Lupus_Chat A5 : I enjoy meeting, connecting and building relationships with people. I habe never been to let just any and everybody in my personal space. Oh hell no. I am respectful but selective. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: Provide them with information on your illness and its side effects. Do the same with medication so they know the side effects and how that affects you daily. #LupusChat |
 | Fro @rojoafro RT @Lupus_Chat: Q6: Q6: How best can we help our loved ones understand our the complexity of our health and what we experience on a daily basis? #LupusChat https://t.co/FuzTlg1F1R |
| Bri Montgomery @freetobeBri A6 pointing out things in others helps. Now that famous people or TV shows like Queen Sugar show people what it's like, it's easier for some to understand. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A6. Explain as best as possible. Give them books and literature on lupus. Invite them to your doctor's appointments and support groups. That breaks the ice. Let them ask questions. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A5: A5: Ahhh dating! It’s definitely challenging when you live with a chronic illness or disability. I think perhaps it depends on the character and morals of the person in question. It can be disappointing when faced with ableist assholes in the dating scene. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. The biggest ways obviously are education and communication. Educate your loved ones on what Lupus is and how it affects our bodies and quality of lives. #LupusChat |
| 🤦🏼♀️ @harveythepig A5: My boyfriend of going on 5 years met me post-diagnosis. I told him right away and what it all meant, especially since I was 29 when we met and already had lung and kidney involvement. His mom’s close friend died from lupus. He knew what he was getting into. #LupusChat |
| Brian Vogel @bvogel9 @Lupus_Chat A6 #LupusChat verbal verbal verbal. Talk about it. Tell them how ur feeling. Don’t be worried about what people think. U know ur body and symptoms better than anybody even ur doctor. And make sure you see them regularly and tell them EVERYTHING!!! Even if u think it’s stupid. |
| Tiffany ⁷ @TiffanyAndLupus A5: I’ve dated post-lupus and at first things were golden. When my health became more complex & less stable that’s when things ended. I’ve been finicky about dating ever since but I think it’s important to prioritize self when faced with our health challenges #LupusChat |
| 🤦🏼♀️ @harveythepig A5: My parents told me to wait until we’d been dating for a while. If you look back at my answer to Q1, you’ll see exactly why I didn’t take their advice. 😂 Although I was diagnosed after he and I met. Still. I’m very gun shy about not disclosing my diagnosis #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A5: A5: I’ve dated post-lupus and at first things were golden. When my health became more complex & less stable that’s when things ended. I’ve been finicky about dating ever since but I think it’s important to prioritize self when faced with our health challenges #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A5: I’ve spoken to my therapist about disclosing about my health while dating. She felt it isn’t necessary to disclose my personal information until I was sure the like was mutual (3 months). Why bare your soul before you know a person she said. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. Use resources, including and especially first hand account from people who have Lupus. And use your own experience, communicate how Lupus affects you personally. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @bvogel9: @Lupus_Chat A6 #LupusChat verbal verbal verbal. Talk about it. Tell them how ur feeling. Don’t be worried about what people think. U know ur body and symptoms better than anybody even ur doctor. And make sure you see them regularly and tell them EVERYTHING!!! Even if u think it’s stupid. |
| #LupusChat @Lupus_Chat RT @harveythepig: A5: A5: My boyfriend of going on 5 years met me post-diagnosis. I told him right away and what it all meant, especially since I was 29 when we met and already had lung and kidney involvement. His mom’s close friend died from lupus. He knew what he was getting into. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @harveythepig: A5: A5: My boyfriend of going on 5 years met me post-diagnosis. I told him right away and what it all meant, especially since I was 29 when we met and already had lung and kidney involvement. His mom’s close friend died from lupus. He knew what he was getting into. #LupusChat |
#LupusChat content from Twitter.