#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 will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
 | arrghgtr @arrghgtr RT @Lupus_Chat: 🚨 We're less than 30 minutes away from our next #LupusChat on Health Disclosures. Grab your snacks 🍿🍩🥤 and set your alarms! ⏰ We can't wait to chat with you!! https://t.co/A96LNZrS6k |
 | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
 | Tiffany ⁷ @TiffanyAndLupus Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣⌛️ https://t.co/fTDznCzK08 |
 | Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 #LupusChat tiiiiiiiiiiiime! https://t.co/cjKpjaldpb |
| #LupusChat @Lupus_Chat Gentle reminder, there is no obligation to disclose or share information about your chronic illness. People are not always receptive or understanding and it is ultimately your decision to make. #LupusChat https://t.co/S3Kakb1jhS |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Gentle reminder, there is no obligation to disclose or share information about your chronic illness. People are not always receptive or understanding and it is ultimately your decision to make. #LupusChat https://t.co/S3Kakb1jhS |
 | Rachael (rah-shell) Jay ⚡ @_RachaelTV RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Gentle reminder, there is no obligation to disclose or share information about your chronic illness. People are not always receptive or understanding and it is ultimately your decision to make. #LupusChat https://t.co/S3Kakb1jhS |
| #LupusChat @Lupus_Chat Bienvenido a #LupusChat! Hoy discutiremos cómo mantener una conversación con las personas que nos rodean sobre nuestra salud. Juntos, preguntaremos el momento adecuado para divulgar si deberíamos abrirnos sobre nuestra enfermedad crónica. https://t.co/KWFQF9nEs5 |
| #LupusChat @Lupus_Chat Disclosure is a big step to take, which can have various different outcomes. The risks and benefits can vary depending on your circumstances. Coming up, we’ll explore scenarios that will help decide which steps to take. 👣#LupusChat https://t.co/Fppb2YqfTo |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Disclosure is a big step to take, which can have various different outcomes. The risks and benefits can vary depending on your circumstances. Coming up, we’ll explore scenarios that will help decide which steps to take. 👣#LupusChat https://t.co/Fppb2YqfTo |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos cómo mantener una conversación con las personas que nos rodean sobre nuestra salud. Juntos, preguntaremos el momento adecuado para divulgar si deberíamos abrirnos sobre nuestra enfermedad crónica. https://t.co/KWFQF9nEs5 |
| #LupusChat @Lupus_Chat Recordatorio amistoso, no hay obligación de divulgar o compartir información sobre su enfermedad crónica. Las personas no siempre son receptivas o comprensivas y, en última instancia, es su decisión tomarlas. #LupusChat https://t.co/DqpjqVxkpu |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Disclosure is a big step to take, which can have various different outcomes. The risks and benefits can vary depending on your circumstances. Coming up, we’ll explore scenarios that will help decide which steps to take. 👣#LupusChat https://t.co/Fppb2YqfTo |
| #LupusChat @Lupus_Chat Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| #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/fVRZhpHtDI |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos cómo mantener una conversación con las personas que nos rodean sobre nuestra salud. Juntos, preguntaremos el momento adecuado para divulgar si deberíamos abrirnos sobre nuestra enfermedad crónica. https://t.co/KWFQF9nEs5 |
| #LupusChat @Lupus_Chat Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/roDTgptI4U |
 | Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: 🚨 We're less than 30 minutes away from our next #LupusChat on Health Disclosures. Grab your snacks 🍿🍩🥤 and set your alarms! ⏰ We can't wait to chat with you!! https://t.co/A96LNZrS6k |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Disclosure is a big step to take, which can have various different outcomes. The risks and benefits can vary depending on your circumstances. Coming up, we’ll explore scenarios that will help decide which steps to take. 👣#LupusChat https://t.co/Fppb2YqfTo |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Gentle reminder, there is no obligation to disclose or share information about your chronic illness. People are not always receptive or understanding and it is ultimately your decision to make. #LupusChat https://t.co/S3Kakb1jhS |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
| #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/Ke5g4Ob6Qa |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Gentle reminder, there is no obligation to disclose or share information about your chronic illness. People are not always receptive or understanding and it is ultimately your decision to make. #LupusChat https://t.co/S3Kakb1jhS |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Disclosure is a big step to take, which can have various different outcomes. The risks and benefits can vary depending on your circumstances. Coming up, we’ll explore scenarios that will help decide which steps to take. 👣#LupusChat https://t.co/Fppb2YqfTo |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| 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/fVRZhpHtDI |
| #LupusChat @Lupus_Chat Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
| #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/OdC0joIHUh |
| #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/NQRox7TypH |
| #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/5CZ77QIdbt |
| 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/Ke5g4Ob6Qa |
| #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 |
| #LupusChat @Lupus_Chat Por favor, respete a nuestros invitados especiales y unos a otros y guardar todas las preguntas personales para después de #LupusChat. |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/roDTgptI4U |
 | Caring For Lupus @CaringForLupus 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/OdC0joIHUh |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/roDTgptI4U |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos cómo mantener una conversación con las personas que nos rodean sobre nuestra salud. Juntos, preguntaremos el momento adecuado para divulgar si deberíamos abrirnos sobre nuestra enfermedad crónica. https://t.co/KWFQF9nEs5 |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
| #LupusChat @Lupus_Chat Let’s get our #LupusChat party started! Share your name, location, connection to lupus & what’s your favorite summer jam to listen to? 🎧🎼 https://t.co/vfY0WBhnLj |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & what’s your favorite summer jam to listen to? 🎧🎼 https://t.co/vfY0WBhnLj |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & what’s your favorite summer jam to listen to? 🎧🎼 https://t.co/vfY0WBhnLj |
 | Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Hey there. I’m Christele, #LupusChat co-host based in NY, and I’ve had Lupus since 2007. Fav summer jam is tied between Summertime by Vybz Kartel and Work by Rihanna https://t.co/07XUOcILzb |
 | N. Alvis @Niurkal 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/fVRZhpHtDI |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Gentle reminder, there is no obligation to disclose or share information about your chronic illness. People are not always receptive or understanding and it is ultimately your decision to make. #LupusChat https://t.co/S3Kakb1jhS |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Disclosure is a big step to take, which can have various different outcomes. The risks and benefits can vary depending on your circumstances. Coming up, we’ll explore scenarios that will help decide which steps to take. 👣#LupusChat https://t.co/Fppb2YqfTo |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/roDTgptI4U |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & what’s your favorite summer jam to listen to? 🎧🎼 https://t.co/vfY0WBhnLj |
| #LupusChat @Lupus_Chat RT @Xtel007: Hey there. I’m Christele, #LupusChat co-host based in NY, and I’ve had Lupus since 2007. Fav summer jam is tied between Summertime by Vybz Kartel and Work by Rihanna https://t.co/07XUOcILzb |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Welcome to #LupusChat! Today we will discuss how to have a conversation with the people around us about our health. Together, we’ll question the right time to disclose and weigh whether we should open up about our chronic illness. 🗣 https://t.co/rxtKp1oRVs |
| Tiffany ⁷ @TiffanyAndLupus Hello 👋🏾, I’m Tiffany, your #LupusChat co-host from New York City. I’ve been kicking lupus arse for about 8 years now & my favorite summer jam right now is @TPAIN’s BOO’D Up Remix! 😩👌🏾🎶 https://t.co/43X2JkVAbB |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: Hey there. I’m Christele, #LupusChat co-host based in NY, and I’ve had Lupus since 2007. Fav summer jam is tied between Summertime by Vybz Kartel and Work by Rihanna https://t.co/07XUOcILzb |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: Hello 👋🏾, I’m Tiffany, your #LupusChat co-host from New York City. I’ve been kicking lupus arse for about 8 years now & my favorite summer jam right now is @TPAIN’s BOO’D Up Remix! 😩👌🏾🎶 https://t.co/43X2JkVAbB |
| #LupusChat @Lupus_Chat Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y Cuál es tu canción favorita de verano para escuchar? https://t.co/cbRtvHOiua |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: Hello 👋🏾, I’m Tiffany, your #LupusChat co-host from New York City. I’ve been kicking lupus arse for about 8 years now & my favorite summer jam right now is @TPAIN’s BOO’D Up Remix! 😩👌🏾🎶 https://t.co/43X2JkVAbB |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y Cuál es tu canción favorita de verano para escuchar? https://t.co/cbRtvHOiua |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: Hello 👋🏾, I’m Tiffany, your #LupusChat co-host from New York City. I’ve been kicking lupus arse for about 8 years now & my favorite summer jam right now is @TPAIN’s BOO’D Up Remix! 😩👌🏾🎶 https://t.co/43X2JkVAbB |
| Caring For Lupus @CaringForLupus RT @Xtel007: Hey there. I’m Christele, #LupusChat co-host based in NY, and I’ve had Lupus since 2007. Fav summer jam is tied between Summertime by Vybz Kartel and Work by Rihanna https://t.co/07XUOcILzb |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & what’s your favorite summer jam to listen to? 🎧🎼 https://t.co/vfY0WBhnLj |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y Cuál es tu canción favorita de verano para escuchar? https://t.co/cbRtvHOiua |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & what’s your favorite summer jam to listen to? 🎧🎼 https://t.co/vfY0WBhnLj |
 | Nicole Shepard @thepcdiva Nicole / #LupusPatient since 87' #LupusAdvocate since 03' Fav 🎵 Summertime Will Smith #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @thepcdiva: Nicole / #LupusPatient since 87' #LupusAdvocate since 03' Fav 🎵 Summertime Will Smith #lupuschat |
| #LupusChat @Lupus_Chat RT @thepcdiva: Nicole / #LupusPatient since 87' #LupusAdvocate since 03' Fav 🎵 Summertime Will Smith #lupuschat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat Ivey Janette,Albuquerque,DX'D with SLE/lupus nephritis 1995. Favorite summer jam? Too many to list. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @thepcdiva Heyyyy sis! I've missed you. So happy to see you here at #LupusChat today. <333 |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat Ivey Janette,Albuquerque,DX'D with SLE/lupus nephritis 1995. Favorite summer jam? Too many to list. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat Ivey Janette,Albuquerque,DX'D with SLE/lupus nephritis 1995. Favorite summer jam? Too many to list. #LupusChat |
 | 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 Hey guys. I’m Sophia living in the DMV these days. Dxd w/lupus 3 years ago (and other stuff, lol. Lupus likes to bring “friends with it Smdh) I’m feeling Ciara’s new song Level Up… gets these creaky joints moving. 👋🏾 #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
| Caring For Lupus @CaringForLupus RT @thepcdiva: Nicole / #LupusPatient since 87' #LupusAdvocate since 03' Fav 🎵 Summertime Will Smith #lupuschat |
| Caring For Lupus @CaringForLupus RT @iveyjanette_207: @Lupus_Chat Ivey Janette,Albuquerque,DX'D with SLE/lupus nephritis 1995. Favorite summer jam? Too many to list. #LupusChat |
| Caring For Lupus @CaringForLupus RT @_RachaelTV: @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @_RachaelTV: @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Pippilotta08: Hey guys. I’m Sophia living in the DMV these days. Dxd w/lupus 3 years ago (and other stuff, lol. Lupus likes to bring “friends with it Smdh) I’m feeling Ciara’s new song Level Up… gets these creaky joints moving. 👋🏾 #LupusChat |
| #LupusChat @Lupus_Chat RT @Pippilotta08: Hey guys. I’m Sophia living in the DMV these days. Dxd w/lupus 3 years ago (and other stuff, lol. Lupus likes to bring “friends with it Smdh) I’m feeling Ciara’s new song Level Up… gets these creaky joints moving. 👋🏾 #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
 | 💫 @CitrineDreamss Heyyy, I’m Yvonne based in CA. Just recently diagnosed with SLE. Fav jam right now is Nice by The Carter’s #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @_RachaelTV: @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Pippilotta08: Hey guys. I’m Sophia living in the DMV these days. Dxd w/lupus 3 years ago (and other stuff, lol. Lupus likes to bring “friends with it Smdh) I’m feeling Ciara’s new song Level Up… gets these creaky joints moving. 👋🏾 #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Pippilotta08 hol up I'm listening to this for the first time... thanks for the suggestion! #LupusChat |
 | Meg Nunez @Megisflying @Lupus_Chat Meg, I’m in Florida, I have lupus sle w kidney and other organ involvement. I don’t really have a fav jam atm, mostly listen to books on tape, but like most all music 🎶 #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus @Pippilotta08 Hey Sophia! Welcome to #LupusChat! Yassssssss, if anything is gonna get our bones moving it's her new song for the summer. |
| #LupusChat @Lupus_Chat RT @CitrineDreamss: Heyyy, I’m Yvonne based in CA. Just recently diagnosed with SLE. Fav jam right now is Nice by The Carter’s #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 @_RachaelTV 😂😂😂 I’m glad I mentioned it then. Definitely a good jam. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CitrineDreamss: Heyyy, I’m Yvonne based in CA. Just recently diagnosed with SLE. Fav jam right now is Nice by The Carter’s #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @CitrineDreamss Honestly, truly! So blessed and highly favored that Queen Bey blessed us with a whole album full of summer bops! I love summer & friends the most. #LupusChat |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat Meg, I’m in Florida, I have lupus sle w kidney and other organ involvement. I don’t really have a fav jam atm, mostly listen to books on tape, but like most all music 🎶 #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @Megisflying: @Lupus_Chat Meg, I’m in Florida, I have lupus sle w kidney and other organ involvement. I don’t really have a fav jam atm, mostly listen to books on tape, but like most all music 🎶 #lupuschat |
| #LupusChat @Lupus_Chat Everyone ready? Here comes Question 1! #LupusChat https://t.co/5jv0HxiB5j |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Everyone ready? Here comes Question 1! #LupusChat https://t.co/5jv0HxiB5j |
| #LupusChat @Lupus_Chat Q1: Can you share a time when you disclosed information about your health? How did it go and how did you know or feel that was the right time? #LupusChat https://t.co/TCYni4xVkF |
| Friends AgainstLupus @AgainstLupus RT @Pippilotta08: Hey guys. I’m Sophia living in the DMV these days. Dxd w/lupus 3 years ago (and other stuff, lol. Lupus likes to bring “friends with it Smdh) I’m feeling Ciara’s new song Level Up… gets these creaky joints moving. 👋🏾 #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q1: Q1: Can you share a time when you disclosed information about your health? How did it go and how did you know or feel that was the right time? #LupusChat https://t.co/TCYni4xVkF |
| Friends AgainstLupus @AgainstLupus RT @_RachaelTV: @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Everyone ready? Here comes Question 1! #LupusChat https://t.co/5jv0HxiB5j |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q1: Q1: Can you share a time when you disclosed information about your health? How did it go and how did you know or feel that was the right time? #LupusChat https://t.co/TCYni4xVkF |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. Most of the people who know about my Lupus know from me talking about it on social media, honestly lol #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/roDTgptI4U |
| Caring For Lupus @CaringForLupus Hi, I'm Elizabeth from NJ. A #LupusChat co-host My daughter is a #LupusWarrior. My favorite summer song is Bruno Mars - Finesse https://t.co/yzeULHjB7c |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. I also had to disclose to my soccer team (via a super long facebook post on our group page), because I had missed few practice/games and was worried they thought I was just being lazy. The team and coach were super supportive. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. In the past I’ve shared my diagnosis early, a way to “weed out” people I wouldn’t be able to count on early, before I got attached. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. I also want people to know what to expect. I used to get worried that if I tell later, it would come off as an excuse. #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 A1 I’ve had to disclose at work for various reasons. I hate it for all the reasons that go along with having to disclose. Everyone in your corner aren’t really IN your corner. Honestly I wish I didn’t have to. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @CaringForLupus: Hi, I'm Elizabeth from NJ. A #LupusChat co-host My daughter is a #LupusWarrior. My favorite summer song is Bruno Mars - Finesse https://t.co/yzeULHjB7c |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y Cuál es tu canción favorita de verano para escuchar? https://t.co/cbRtvHOiua |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Pippilotta08: A1 I’ve had to disclose at work for various reasons. I hate it for all the reasons that go along with having to disclose. Everyone in your corner aren’t really IN your corner. Honestly I wish I didn’t have to. #LupusChat |
| #LupusChat @Lupus_Chat Q1: Puede compartir un momento en que divulgó información sobre su salud? Cómo fue y cómo supo/sintió que era el momento adecuado? #LupusChat https://t.co/syL4QdX9Hb |
| #LupusChat @Lupus_Chat @Niurkal Bienvenido Niurka!! No olvides poner la etiqueta #LupusChat en tus tweets para que podamos verlas. |
| Tiffany ⁷ @TiffanyAndLupus RT @Pippilotta08: A1 I’ve had to disclose at work for various reasons. I hate it for all the reasons that go along with having to disclose. Everyone in your corner aren’t really IN your corner. Honestly I wish I didn’t have to. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. Most of the people who know about my Lupus know from me talking about it on social media, honestly lol #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: Hi, I'm Elizabeth from NJ. A #LupusChat co-host My daughter is a #LupusWarrior. My favorite summer song is Bruno Mars - Finesse https://t.co/yzeULHjB7c |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. I also had to disclose to my soccer team (via a super long facebook post on our group page), because I had missed few practice/games and was worried they thought I was just being lazy. The team and coach were super supportive. #LupusChat |
| #LupusChat @Lupus_Chat RT @Pippilotta08: A1 I’ve had to disclose at work for various reasons. I hate it for all the reasons that go along with having to disclose. Everyone in your corner aren’t really IN your corner. Honestly I wish I didn’t have to. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Everyone ready? Here comes Question 1! #LupusChat https://t.co/5jv0HxiB5j |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. I also want people to know what to expect. I used to get worried that if I tell later, it would come off as an excuse. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. In the past I’ve shared my diagnosis early, a way to “weed out” people I wouldn’t be able to count on early, before I got attached. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q1: Q1: Can you share a time when you disclosed information about your health? How did it go and how did you know or feel that was the right time? #LupusChat https://t.co/TCYni4xVkF |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat A1 first time i told anyone outside of my family, I was in college. I spat it out and I think it was fine lol. 40000 undergrads and no one knew for a few months...I just wanted someone to know #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @_RachaelTV: @Lupus_Chat A1 first time i told anyone outside of my family, I was in college. I spat it out and I think it was fine lol. 40000 undergrads and no one knew for a few months...I just wanted someone to know #LupusChat |
| Caring For Lupus @CaringForLupus A1. I never going to forget the first time ... we had to tell Miah her Lupus diagnosis. I guess she could see/tell that we were worried Miah asked; is it that bad? I told her : Honey... finally we have a name for your rash...ulcers.. it it called Lupus #LupusChat |
| Caring For Lupus @CaringForLupus A1. I had to informed my Human Research department about Miah's diagnosis because I was running out of days. I was using all my vacation days for her appointments. I was informed about The Family and Medical Leave Act (FMLA). #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @CaringForLupus: A1. I never going to forget the first time ... we had to tell Miah her Lupus diagnosis. I guess she could see/tell that we were worried Miah asked; is it that bad? I told her : Honey... finally we have a name for your rash...ulcers.. it it called Lupus #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q1: Q1: Can you share a time when you disclosed information about your health? How did it go and how did you know or feel that was the right time? #LupusChat https://t.co/TCYni4xVkF |
| Tiffany ⁷ @TiffanyAndLupus A1: I disclosed about my health in a really non-traditional way I guess. I updated my facebook after being a ghost for like four months. lol "SO I HAVE LUPUS NOW" My family was in a frenzy over it. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A1. I never going to forget the first time ... we had to tell Miah her Lupus diagnosis. I guess she could see/tell that we were worried Miah asked; is it that bad? I told her : Honey... finally we have a name for your rash...ulcers.. it it called Lupus #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @_RachaelTV: @Lupus_Chat A1 first time i told anyone outside of my family, I was in college. I spat it out and I think it was fine lol. 40000 undergrads and no one knew for a few months...I just wanted someone to know #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. In the past I’ve shared my diagnosis early, a way to “weed out” people I wouldn’t be able to count on early, before I got attached. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. I also want people to know what to expect. I used to get worried that if I tell later, it would come off as an excuse. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. I also had to disclose to my soccer team (via a super long facebook post on our group page), because I had missed few practice/games and was worried they thought I was just being lazy. The team and coach were super supportive. #LupusChat |
| Caring For Lupus @CaringForLupus A1. Tuve una reunión con mis supervisores para compartir el diagnóstico de mi hija. Para que entendieran la razón porque yo estaba tomando tantos días libres. #LupusChat |
| Caring For Lupus @CaringForLupus A1. I had a team meeting with my supervisors to share my daughter's diagnosis. In order for them to understand the reason why I was taking so many days off. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A1. When I was finally DX'D in early 1995,I informed my manager and HR at work. As well as my family. Condescending reaction and attitude. Very negative. Was treated like an invalid or a "cripple". #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A1: A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| Caring For Lupus @CaringForLupus A1. Tuve que informar al departamento de HR sobre el diagnóstico de Miah porque me estaba quedando sin días . Estaba usando todos mis días de vacaciones para sus citas. Fui informado sobre la Ley FMLA. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. I had to informed my Human Research department about Miah's diagnosis because I was running out of days. I was using all my vacation days for her appointments. I was informed about The Family and Medical Leave Act (FMLA). #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @CaringForLupus: A1. I had a team meeting with my supervisors to share my daughter's diagnosis. In order for them to understand the reason why I was taking so many days off. #LupusChat |
| #LupusChat @Lupus_Chat RT @olgatgn: |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. I never going to forget the first time ... we had to tell Miah her Lupus diagnosis. I guess she could see/tell that we were worried Miah asked; is it that bad? I told her : Honey... finally we have a name for your rash...ulcers.. it it called Lupus #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A1. I also had to disclose to my soccer team (via a super long facebook post on our group page), because I had missed few practice/games and was worried they thought I was just being lazy. The team and coach were super supportive. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat A1 cont - I've also disclosed at one employer. there was a change in management so I figured I'd get it out in the open. Not sure if it was the best decision in the long run but you live and learn. V difficult decision when it comes to employers #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q1: Q1: Puede compartir un momento en que divulgó información sobre su salud? Cómo fue y cómo supo/sintió que era el momento adecuado? #LupusChat https://t.co/syL4QdX9Hb |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A1. When I was finally DX'D in early 1995,I informed my manager and HR at work. As well as my family. Condescending reaction and attitude. Very negative. Was treated like an invalid or a "cripple". #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. I had a team meeting with my supervisors to share my daughter's diagnosis. In order for them to understand the reason why I was taking so many days off. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @iveyjanette_207: @Lupus_Chat A1. When I was finally DX'D in early 1995,I informed my manager and HR at work. As well as my family. Condescending reaction and attitude. Very negative. Was treated like an invalid or a "cripple". #LupusChat |
| Caring For Lupus @CaringForLupus RT @olgatgn: |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A1: A1: I disclosed about my health in a really non-traditional way I guess. I updated my facebook after being a ghost for like four months. lol "SO I HAVE LUPUS NOW" My family was in a frenzy over it. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @iveyjanette_207 @Lupus_Chat Dang I'm so sorry. People can be such jerks. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A1. I had a team meeting with my supervisors to share my daughter's diagnosis. In order for them to understand the reason why I was taking so many days off. #LupusChat |
| #LupusChat @Lupus_Chat There are many things to consider when deciding to disclose to others. We’ll cover how your current health status impacts your decision for Question 2. #LupusChat https://t.co/fKimh4a99Z |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: There are many things to consider when deciding to disclose to others. We’ll cover how your current health status impacts your decision for Question 2. #LupusChat https://t.co/fKimh4a99Z |
| Caring For Lupus @CaringForLupus RT @Pippilotta08: A1 I’ve had to disclose at work for various reasons. I hate it for all the reasons that go along with having to disclose. Everyone in your corner aren’t really IN your corner. Honestly I wish I didn’t have to. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A1: A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A1: A1: I disclosed about my health in a really non-traditional way I guess. I updated my facebook after being a ghost for like four months. lol "SO I HAVE LUPUS NOW" My family was in a frenzy over it. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @_RachaelTV: @Lupus_Chat A1 first time i told anyone outside of my family, I was in college. I spat it out and I think it was fine lol. 40000 undergrads and no one knew for a few months...I just wanted someone to know #LupusChat |
| Caring For Lupus @CaringForLupus RT @_RachaelTV: @Lupus_Chat A1 first time i told anyone outside of my family, I was in college. I spat it out and I think it was fine lol. 40000 undergrads and no one knew for a few months...I just wanted someone to know #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A1. I never going to forget the first time ... we had to tell Miah her Lupus diagnosis. I guess she could see/tell that we were worried Miah asked; is it that bad? I told her : Honey... finally we have a name for your rash...ulcers.. it it called Lupus #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @iveyjanette_207: @Lupus_Chat A1. When I was finally DX'D in early 1995,I informed my manager and HR at work. As well as my family. Condescending reaction and attitude. Very negative. Was treated like an invalid or a "cripple". #LupusChat |
| #LupusChat @Lupus_Chat Q2: Has the severity of your health ever affected your decision to disclose with others? 💥🤔 #LupusChat https://t.co/550E0NdLYK |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A1: A1: I disclosed about my health in a really non-traditional way I guess. I updated my facebook after being a ghost for like four months. lol "SO I HAVE LUPUS NOW" My family was in a frenzy over it. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @olgatgn: |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q2: Q2: Has the severity of your health ever affected your decision to disclose with others? 💥🤔 #LupusChat https://t.co/550E0NdLYK |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A1: A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q2: Q2: Has the severity of your health ever affected your decision to disclose with others? 💥🤔 #LupusChat https://t.co/550E0NdLYK |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A1. In the past I’ve shared my diagnosis early, a way to “weed out” people I wouldn’t be able to count on early, before I got attached. #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 RT @TiffanyAndLupus: A1: A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A1. I had to informed my Human Research department about Miah's diagnosis because I was running out of days. I was using all my vacation days for her appointments. I was informed about The Family and Medical Leave Act (FMLA). #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Xtel007: A1. I also want people to know what to expect. I used to get worried that if I tell later, it would come off as an excuse. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q1: Q1: Puede compartir un momento en que divulgó información sobre su salud? Cómo fue y cómo supo/sintió que era el momento adecuado? #LupusChat https://t.co/syL4QdX9Hb |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 RT @_RachaelTV: @Lupus_Chat A1 cont - I've also disclosed at one employer. there was a change in management so I figured I'd get it out in the open. Not sure if it was the best decision in the long run but you live and learn. V difficult decision when it comes to employers #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. The severity of my health, and the headspace I was in at the time definitely affects my decision to disclose. I actually prefer to not disclose while I’m super sick, because I don’t need the looks of pity. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @_RachaelTV: @Lupus_Chat A1 cont - I've also disclosed at one employer. there was a change in management so I figured I'd get it out in the open. Not sure if it was the best decision in the long run but you live and learn. V difficult decision when it comes to employers #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Pippilotta08: A1 I’ve had to disclose at work for various reasons. I hate it for all the reasons that go along with having to disclose. Everyone in your corner aren’t really IN your corner. Honestly I wish I didn’t have to. #LupusChat |
| #LupusChat @Lupus_Chat Q2: La gravedad de su salud ha afectado alguna vez su decisión de revelar a otros? #LupusChat https://t.co/flg9yMtSMy |
| #LupusChat @Lupus_Chat RT @Xtel007: A2. The severity of my health, and the headspace I was in at the time definitely affects my decision to disclose. I actually prefer to not disclose while I’m super sick, because I don’t need the looks of pity. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. It’s almost always easier to disclose when I’m a little bit more in control of my health and feeling less vulnerable. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Pippilotta08: Hey guys. I’m Sophia living in the DMV these days. Dxd w/lupus 3 years ago (and other stuff, lol. Lupus likes to bring “friends with it Smdh) I’m feeling Ciara’s new song Level Up… gets these creaky joints moving. 👋🏾 #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Megisflying: @Lupus_Chat Meg, I’m in Florida, I have lupus sle w kidney and other organ involvement. I don’t really have a fav jam atm, mostly listen to books on tape, but like most all music 🎶 #lupuschat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. Tuve que informar al departamento de HR sobre el diagnóstico de Miah porque me estaba quedando sin días . Estaba usando todos mis días de vacaciones para sus citas. Fui informado sobre la Ley FMLA. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CitrineDreamss: Heyyy, I’m Yvonne based in CA. Just recently diagnosed with SLE. Fav jam right now is Nice by The Carter’s #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: I disclosed about my health in a really non-traditional way I guess. I updated my facebook after being a ghost for like four months. lol "SO I HAVE LUPUS NOW" My family was in a frenzy over it. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. Tuve una reunión con mis supervisores para compartir el diagnóstico de mi hija. Para que entendieran la razón porque yo estaba tomando tantos días libres. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @_RachaelTV: @Lupus_Chat Hi everyone. I'm rachael (rah-shell) currently living in Iowa, Midwest doesn't know what season it is, USA. Dx SLE 2009. Recently I've stopped skipping songs on the ipod and I'm discovering all types of songs lol #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A1: Dont even get me started on when it’s the right time to disclose about my health while DATING. It’s a wild ride on the anxiety train, lol! It isn’t easy but I think I know when is right for me now. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @thepcdiva: Nicole / #LupusPatient since 87' #LupusAdvocate since 03' Fav 🎵 Summertime Will Smith #lupuschat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q2: Q2: Has the severity of your health ever affected your decision to disclose with others? 💥🤔 #LupusChat https://t.co/550E0NdLYK |
| #LupusChat @Lupus_Chat RT @Xtel007: A2. It’s almost always easier to disclose when I’m a little bit more in control of my health and feeling less vulnerable. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: Dont even get me started on when it’s the right time to disclose about my health while DATING. It’s a wild ride on the anxiety train, lol! It isn’t easy but I think I know when is right for me now. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q2: Q2: La gravedad de su salud ha afectado alguna vez su decisión de revelar a otros? #LupusChat https://t.co/flg9yMtSMy |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: There are many things to consider when deciding to disclose to others. We’ll cover how your current health status impacts your decision for Question 2. #LupusChat https://t.co/fKimh4a99Z |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q2: Q2: Has the severity of your health ever affected your decision to disclose with others? 💥🤔 #LupusChat https://t.co/550E0NdLYK |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q2: Q2: La gravedad de su salud ha afectado alguna vez su decisión de revelar a otros? #LupusChat https://t.co/flg9yMtSMy |
| Caring For Lupus @CaringForLupus RT @Xtel007: A2. The severity of my health, and the headspace I was in at the time definitely affects my decision to disclose. I actually prefer to not disclose while I’m super sick, because I don’t need the looks of pity. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q2: Q2: Has the severity of your health ever affected your decision to disclose with others? 💥🤔 #LupusChat https://t.co/550E0NdLYK |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A1: A1: Dont even get me started on when it’s the right time to disclose about my health while DATING. It’s a wild ride on the anxiety train, lol! It isn’t easy but I think I know when is right for me now. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @CaringForLupus what is this? my rheum has spoken about it before and i'd never heard of it (i believe it's the same thing) #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A2. Yes. I didn't disclose it at my current job until 3 years ago for fear of losing hours and/or being fired. And I never disclosed it to my boyfriends. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @_RachaelTV @CaringForLupus The Human Resources department at work. So they can help you set up FMLA (family and medical leave) #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A2. Yes. I didn't disclose it at my current job until 3 years ago for fear of losing hours and/or being fired. And I never disclosed it to my boyfriends. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: @_RachaelTV @CaringForLupus The Human Resources department at work. So they can help you set up FMLA (family and medical leave) #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @iveyjanette_207: @Lupus_Chat A2. Yes. I didn't disclose it at my current job until 3 years ago for fear of losing hours and/or being fired. And I never disclosed it to my boyfriends. #LupusChat |
| #LupusChat @Lupus_Chat Describing how our health affects us can be difficult. In Question 3, we’ll discuss expressing the impacts of our symptoms to others. #LupusChat https://t.co/SSQJrykGZJ |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A1: A1: Dont even get me started on when it’s the right time to disclose about my health while DATING. It’s a wild ride on the anxiety train, lol! It isn’t easy but I think I know when is right for me now. #LupusChat |
 | Brian Vogel @bvogel9 @Lupus_Chat A1. When i had to apply for FMLA and Hr had given me a difficult time. They wanted a specific frequency i would need time off. And we all know the disease is unpredictable and you can’t put an estimated time on how long a flare may last. Luckily my doc had my back. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @bvogel9: @Lupus_Chat A1. When i had to apply for FMLA and Hr had given me a difficult time. They wanted a specific frequency i would need time off. And we all know the disease is unpredictable and you can’t put an estimated time on how long a flare may last. Luckily my doc had my back. #LupusChat |
| #LupusChat @Lupus_Chat Q3: What clinical and non-clinical terms do you use when explaining your health to others? #LupusChat https://t.co/XatVCfRSmc |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 A2 Disclosing can sometimes bring on unwanted judgment and “cure” ideas. When I’m feeling strong it’s laughable, when I’m sick it makes me sadder. When disclosing means another person is inspired to find answers for their own struggles… then it’s worth it #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Describing how our health affects us can be difficult. In Question 3, we’ll discuss expressing the impacts of our symptoms to others. #LupusChat https://t.co/SSQJrykGZJ |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q3: Q3: What clinical and non-clinical terms do you use when explaining your health to others? #LupusChat https://t.co/XatVCfRSmc |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A3. I explain that is is “autoimmune” and that “immune system attacks my own cell”. Then I focus on how it makes me feel, I talk about my fatigue and low energy, etc. #LupusChat |
| Caring For Lupus @CaringForLupus A2 At the beginning of the diagnosis, I thought we didn't need 2 setup a 504 plan at her school, that change quickly when I noticed that she was experiencing photosensitivity. I requested a meeting w/ the school nurses, teachers, counselor to disclose Miah's diagnosis #LupusChat |
| Caring For Lupus @CaringForLupus RT @bvogel9: @Lupus_Chat A1. When i had to apply for FMLA and Hr had given me a difficult time. They wanted a specific frequency i would need time off. And we all know the disease is unpredictable and you can’t put an estimated time on how long a flare may last. Luckily my doc had my back. #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @bvogel9 @Lupus_Chat this is what worries me about some HR departments... you never know when you'll get a cooperative one. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @Pippilotta08 Omg the cure ideas are THE WORST! #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @TiffanyAndLupus @CaringForLupus I'm going to have to look into this for sure....send the info to my parents back home, as well! #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus A2: The severity of my health definitely effects how and when I disclose. I prefer to discuss my health when I’m at my healthiest so that on my bad days they can understand the gravity of our prior discussion on my health. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Pippilotta08: A2 Disclosing can sometimes bring on unwanted judgment and “cure” ideas. When I’m feeling strong it’s laughable, when I’m sick it makes me sadder. When disclosing means another person is inspired to find answers for their own struggles… then it’s worth it #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Describing how our health affects us can be difficult. In Question 3, we’ll discuss expressing the impacts of our symptoms to others. #LupusChat https://t.co/SSQJrykGZJ |
| Tiffany ⁷ @TiffanyAndLupus RT @Pippilotta08: A2 Disclosing can sometimes bring on unwanted judgment and “cure” ideas. When I’m feeling strong it’s laughable, when I’m sick it makes me sadder. When disclosing means another person is inspired to find answers for their own struggles… then it’s worth it #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A2: A2: The severity of my health definitely effects how and when I disclose. I prefer to discuss my health when I’m at my healthiest so that on my bad days they can understand the gravity of our prior discussion on my health. #LupusChat |
| #LupusChat @Lupus_Chat RT @Pippilotta08: A2 Disclosing can sometimes bring on unwanted judgment and “cure” ideas. When I’m feeling strong it’s laughable, when I’m sick it makes me sadder. When disclosing means another person is inspired to find answers for their own struggles… then it’s worth it #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A3. I explain that is is “autoimmune” and that “immune system attacks my own cell”. Then I focus on how it makes me feel, I talk about my fatigue and low energy, etc. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q3: Q3: What clinical and non-clinical terms do you use when explaining your health to others? #LupusChat https://t.co/XatVCfRSmc |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A2 At the beginning of the diagnosis, I thought we didn't need 2 setup a 504 plan at her school, that change quickly when I noticed that she was experiencing photosensitivity. I requested a meeting w/ the school nurses, teachers, counselor to disclose Miah's diagnosis #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @bvogel9 @Lupus_Chat this is what worries me about some HR departments... you never know when you'll get a cooperative one. #LupusChat |
| #LupusChat @Lupus_Chat RT @olgatgn: |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A2: A2: The severity of my health definitely effects how and when I disclose. I prefer to discuss my health when I’m at my healthiest so that on my bad days they can understand the gravity of our prior discussion on my health. #LupusChat |
| Meg Nunez @Megisflying @CaringForLupus Very important. Good job! #lupuschat |
| Caring For Lupus @CaringForLupus A2 Al comienzo del diagnóstico, pensé que no necesitábamos configurar un plan 504 en su escuela, pero eso cambió cuando noté que estaba experimentando fotosensibilidad Solicité una reunión con enfermeras escolares, los maestros para implementar un plan por los sintomas #LupusChat |
| Meg Nunez @Megisflying @bvogel9 @CaringForLupus @Lupus_Chat Wonderful to have a dr like that. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus A3: I try my best to descríbeme health using non-clinical terms. I’ll say “my kidney doctor told me” instead of “my Nephrologist” and break down in understanding terms about my recent blood tests and how it affects me. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A2 Al comienzo del diagnóstico, pensé que no necesitábamos configurar un plan 504 en su escuela, pero eso cambió cuando noté que estaba experimentando fotosensibilidad Solicité una reunión con enfermeras escolares, los maestros para implementar un plan por los sintomas #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A3: A3: I try my best to descríbeme health using non-clinical terms. I’ll say “my kidney doctor told me” instead of “my Nephrologist” and break down in understanding terms about my recent blood tests and how it affects me. #LupusChat |
| Caring For Lupus @CaringForLupus A2. At the time of her diagnosis, Miah was taking Karate classes, I informed her teacher just in case Miah needed to take break or was absent #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @CaringForLupus: A2. At the time of her diagnosis, Miah was taking Karate classes, I informed her teacher just in case Miah needed to take break or was absent #LupusChat |
| Meg Nunez @Megisflying RT @Pippilotta08: A2 Disclosing can sometimes bring on unwanted judgment and “cure” ideas. When I’m feeling strong it’s laughable, when I’m sick it makes me sadder. When disclosing means another person is inspired to find answers for their own struggles… then it’s worth it #LupusChat |
| #LupusChat @Lupus_Chat It’s Important to encourage children to be proactive about healthcare awareness in their schools and neighborhoods. Next, let’s discuss providing honest information to the kids in our lives. #LupusChat https://t.co/XtgZZIxBDe |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: I try my best to descríbeme health using non-clinical terms. I’ll say “my kidney doctor told me” instead of “my Nephrologist” and break down in understanding terms about my recent blood tests and how it affects me. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A2. At the time of her diagnosis, Miah was taking Karate classes, I informed her teacher just in case Miah needed to take break or was absent #LupusChat |
| #LupusChat @Lupus_Chat Q3: Qué términos clínicos y no clínicos usa al explicar su salud a otros? #LupusChat https://t.co/YJS0mxOdMn |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @TiffanyAndLupus: A1: A1: The hardest thing for me to do was disclose to my friends. My diagnosiswas extremely difficult for some of them to understand & some are still in denial about how it affects my body. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q3: Q3: Qué términos clínicos y no clínicos usa al explicar su salud a otros? #LupusChat https://t.co/YJS0mxOdMn |
| #LupusChat @Lupus_Chat Q4: How best can we have a constructive conversation about health and chronic illness with children in a meaningful way? #LupusChat https://t.co/gNg7RhLXb4 |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 @Lupus_Chat A3These days I only really discuss with people who either have chronic illness or super close people who have taken the time to learn. Everyone else gets a “I’m fine”. I use mostly clinical terms with those I do discuss details with. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q3: Q3: What clinical and non-clinical terms do you use when explaining your health to others? #LupusChat https://t.co/XatVCfRSmc |
| Caring For Lupus @CaringForLupus RT @olgatgn: |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat A2. Yes. I didn't disclose it at my current job until 3 years ago for fear of losing hours and/or being fired. And I never disclosed it to my boyfriends. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A3. I explain that is is “autoimmune” and that “immune system attacks my own cell”. Then I focus on how it makes me feel, I talk about my fatigue and low energy, etc. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A2. The severity of my health, and the headspace I was in at the time definitely affects my decision to disclose. I actually prefer to not disclose while I’m super sick, because I don’t need the looks of pity. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @bvogel9: @Lupus_Chat A1. When i had to apply for FMLA and Hr had given me a difficult time. They wanted a specific frequency i would need time off. And we all know the disease is unpredictable and you can’t put an estimated time on how long a flare may last. Luckily my doc had my back. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q3: Q3: What clinical and non-clinical terms do you use when explaining your health to others? #LupusChat https://t.co/XatVCfRSmc |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q4: Q4: How best can we have a constructive conversation about health and chronic illness with children in a meaningful way? #LupusChat https://t.co/gNg7RhLXb4 |
| Caring For Lupus @CaringForLupus A3 The way Miah explains it … is that with Lupus - your body attacks your own body #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A3. I explain that is is “autoimmune” and that “immune system attacks my own cell”. Then I focus on how it makes me feel, I talk about my fatigue and low energy, etc. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A2 At the beginning of the diagnosis, I thought we didn't need 2 setup a 504 plan at her school, that change quickly when I noticed that she was experiencing photosensitivity. I requested a meeting w/ the school nurses, teachers, counselor to disclose Miah's diagnosis #LupusChat |
| Caring For Lupus @CaringForLupus A3. When I explain fatigue to others, I tell them that her energy level can go from 10 to 0 within seconds and that she is not able to function. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A2. At the time of her diagnosis, Miah was taking Karate classes, I informed her teacher just in case Miah needed to take break or was absent #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q3: Q3: What clinical and non-clinical terms do you use when explaining your health to others? #LupusChat https://t.co/XatVCfRSmc |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3 The way Miah explains it … is that with Lupus - your body attacks your own body #LupusChat |
| #LupusChat @Lupus_Chat RT @Pippilotta08: @Lupus_Chat A3These days I only really discuss with people who either have chronic illness or super close people who have taken the time to learn. Everyone else gets a “I’m fine”. I use mostly clinical terms with those I do discuss details with. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3. When I explain fatigue to others, I tell them that her energy level can go from 10 to 0 within seconds and that she is not able to function. #LupusChat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @TiffanyAndLupus That's an excellent strategy. Language in care is a funny thing; we tend to talk in clinical terms instead of adopting standard languages all can understand. Even w/ primary care doc clients, I remind them to talk to, not at patients. #LupusChat https://t.co/IAsdlhkAEe |
| Caring For Lupus @CaringForLupus A3. One of Miah’s symptoms is Photosensitivity, which is a reaction to natural or artificial light #LupusChat |
| Caring For Lupus @CaringForLupus A3. Uno de los síntomas de Miah es la fotosensibilidad, que es una reacción a la luz natural o artificial #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A4. As much as possible, use simple terms. Explain chronic. Explain things in terms of feelings. Be prepared to honestly answer lots of questions. #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 A4 In my practice I advocate for kids to take time to learn about their health issues as well as supporting them in sharing with their friends if/when they want. Kids are so much more accepting once you’ve given them the tools to understanding #LupusChat |
| Caring For Lupus @CaringForLupus RT @Pippilotta08: @Lupus_Chat A3These days I only really discuss with people who either have chronic illness or super close people who have taken the time to learn. Everyone else gets a “I’m fine”. I use mostly clinical terms with those I do discuss details with. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Pippilotta08: A4 In my practice I advocate for kids to take time to learn about their health issues as well as supporting them in sharing with their friends if/when they want. Kids are so much more accepting once you’ve given them the tools to understanding #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A3: A3: I try my best to descríbeme health using non-clinical terms. I’ll say “my kidney doctor told me” instead of “my Nephrologist” and break down in understanding terms about my recent blood tests and how it affects me. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A2: A2: The severity of my health definitely effects how and when I disclose. I prefer to discuss my health when I’m at my healthiest so that on my bad days they can understand the gravity of our prior discussion on my health. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A4: I think children are far smarter than what we give them credit for. I advise to be plain, and honest. Don’t water down your discussion. Allow them to ask questions if they don’t understand something. & most importantly control your facial expression & emotions. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A3. I use ANA to describe some of the symptoms I have. I often mention. #LupusChat |
| #LupusChat @Lupus_Chat In the US, the Americans with Disabilities Act protects against workplace discrimination. For questions 5 & 6 we’ll discuss the importance of using caution when contemplating informing your employer and how your job has handled past health disclosures. #LupusChat https://t.co/n5vZEkGoZS |
| #LupusChat @Lupus_Chat Q5: Have you been able to disclose about your health or health needs with your co-workers or employer? #LupusChat https://t.co/sVDmDyaYB1 |
| #LupusChat @Lupus_Chat RT @ShereesePubHlth: @TiffanyAndLupus That's an excellent strategy. Language in care is a funny thing; we tend to talk in clinical terms instead of adopting standard languages all can understand. Even w/ primary care doc clients, I remind them to talk to, not at patients. #LupusChat https://t.co/IAsdlhkAEe |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3. One of Miah’s symptoms is Photosensitivity, which is a reaction to natural or artificial light #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A4. As much as possible, use simple terms. Explain chronic. Explain things in terms of feelings. Be prepared to honestly answer lots of questions. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: I think children are far smarter than what we give them credit for. I advise to be plain, and honest. Don’t water down your discussion. Allow them to ask questions if they don’t understand something. & most importantly control your facial expression & emotions. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A3. I use ANA to describe some of the symptoms I have. I often mention. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @kaaay524 Yes, especially for a kid that has Lupus, sugarcoating does a great disservice. Better to give them the tools to take care of themselves. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q5: Q5: Have you been able to disclose about your health or health needs with your co-workers or employer? #LupusChat https://t.co/sVDmDyaYB1 |
| Tiffany ⁷ @TiffanyAndLupus A4: We do a great disserviceto oir children by trying to “protect” them from seeing and knowing the harshness of our health conditions but I find that they have more respect and trust when you disclose. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: @kaaay524 Yes, especially for a kid that has Lupus, sugarcoating does a great disservice. Better to give them the tools to take care of themselves. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A5. I did recently disclose to my closest coworker. He knew the disease already, but only knew people to look very sickly, so he had no idea I had it (obviously). He said me telling him changed his whole outlook on Lupus. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A4. By explaining it in a calm,friendly manner. And by using words that a child can understand. And by reassuring them that it's not the end of the road. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q5: Q5: Have you been able to disclose about your health or health needs with your co-workers or employer? #LupusChat https://t.co/sVDmDyaYB1 |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A5. At the same time, the reason I didn’t disclose to my job since the first day is that I was finally feeling like myself (and like Lupus wasn’t running my life), so that was the last thing I wanted to talk about at the time. #LupusChat |
| Caring For Lupus @CaringForLupus A4; It is important to establish trust with your kids, providing honest information at your child’s level #LupusChat |
| N. Alvis @Niurkal @Lupus_Chat No #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 RT @TiffanyAndLupus: A4: A4: I think children are far smarter than what we give them credit for. I advise to be plain, and honest. Don’t water down your discussion. Allow them to ask questions if they don’t understand something. & most importantly control your facial expression & emotions. #LupusChat |
| Caring For Lupus @CaringForLupus A4 Es importante establecer confianza con sus hijos, brindándoles información honesta al nivel de su hijo #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A4: The more informed that children are about our health and their own begins with our conversations around Health. We should be open and honest because when they become adults they will have to navigate healthcare on their own. & We’ll have taught them how. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: We do a great disserviceto oir children by trying to “protect” them from seeing and knowing the harshness of our health conditions but I find that they have more respect and trust when you disclose. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A5. I did recently disclose to my closest coworker. He knew the disease already, but only knew people to look very sickly, so he had no idea I had it (obviously). He said me telling him changed his whole outlook on Lupus. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A5. At the same time, the reason I didn’t disclose to my job since the first day is that I was finally feeling like myself (and like Lupus wasn’t running my life), so that was the last thing I wanted to talk about at the time. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A4; It is important to establish trust with your kids, providing honest information at your child’s level #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A4 Es importante establecer confianza con sus hijos, brindándoles información honesta al nivel de su hijo #LupusChat |
| #LupusChat @Lupus_Chat RT @Niurkal: @Lupus_Chat No #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q5: Q5: Have you been able to disclose about your health or health needs with your co-workers or employer? #LupusChat https://t.co/sVDmDyaYB1 |
| #LupusChat @Lupus_Chat Q4: De qué manera podemos tener una conversación constructiva sobre la salud y la enfermedad crónica con los niños de una manera significativa? #LupusChat https://t.co/LIq3Bx1pFX |
| #LupusChat @Lupus_Chat Q5: Ha podido informar sobre su salud o necesidades de salud a compañeros de trabajo o empleador? #LupusChat https://t.co/k9IptfaVo7 |
| #LupusChat @Lupus_Chat Stay tuned, our last question is next! #LupusChat https://t.co/dUTrHVUnNq |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A4: A4: The more informed that children are about our health and their own begins with our conversations around Health. We should be open and honest because when they become adults they will have to navigate healthcare on their own. & We’ll have taught them how. #LupusChat |
| #LupusChat @Lupus_Chat Q6: What kind of protective laws and regulations are in place concerning health disclosures in the workplace and have you discussed them with your Human Resources department? #LupusChat https://t.co/qQD3fMTtPo |
| Tiffany ⁷ @TiffanyAndLupus RT @ShereesePubHlth: @TiffanyAndLupus That's an excellent strategy. Language in care is a funny thing; we tend to talk in clinical terms instead of adopting standard languages all can understand. Even w/ primary care doc clients, I remind them to talk to, not at patients. #LupusChat https://t.co/IAsdlhkAEe |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: It’s Important to encourage children to be proactive about healthcare awareness in their schools and neighborhoods. Next, let’s discuss providing honest information to the kids in our lives. #LupusChat https://t.co/XtgZZIxBDe |
| Tiffany ⁷ @TiffanyAndLupus RT @Pippilotta08: @Lupus_Chat A3These days I only really discuss with people who either have chronic illness or super close people who have taken the time to learn. Everyone else gets a “I’m fine”. I use mostly clinical terms with those I do discuss details with. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @olgatgn: |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q6: Q6: What kind of protective laws and regulations are in place concerning health disclosures in the workplace and have you discussed them with your Human Resources department? #LupusChat https://t.co/qQD3fMTtPo |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A5. Yes and no. It's often been a very frustrating process to discuss with HR. Often,it seems like they could care less,and eagerly want to use it as justification for getting me fired. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Q6: Q6: What kind of protective laws and regulations are in place concerning health disclosures in the workplace and have you discussed them with your Human Resources department? #LupusChat https://t.co/qQD3fMTtPo |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. I actually learned about workplace protections for people with Lupus from a prev chat on the subject (and the research I did afterwards). #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Xtel007: A5. At the same time, the reason I didn’t disclose to my job since the first day is that I was finally feeling like myself (and like Lupus wasn’t running my life), so that was the last thing I wanted to talk about at the time. #LupusChat |
| Nicole Shepard @thepcdiva My daughter @jasinator knew @ a very early age. I knew how sick I could get, and I wanted to educate and prepare her as much as possible. She considers Herself a Youth #LupusAdvocate #SoProud #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A5. Yes and no. It's often been a very frustrating process to discuss with HR. Often,it seems like they could care less,and eagerly want to use it as justification for getting me fired. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. My job doesn’t really have an HR dept. But my supervisor (who takes care of almost everything) is kind of aware of my health challenges, even tho I didn’t explicitly SAY it lol #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. I actually learned about workplace protections for people with Lupus from a prev chat on the subject (and the research I did afterwards). #LupusChat |
| Caring For Lupus @CaringForLupus A4 Lupus can impact the whole family Explaining to a child might might feel overwhelming because many times we think that they won't understand but it is important 2 share appropriate information Every family needs 2 judge 4 themselves what their child can understand #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q6: Q6: What kind of protective laws and regulations are in place concerning health disclosures in the workplace and have you discussed them with your Human Resources department? #LupusChat https://t.co/qQD3fMTtPo |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. I also made sure to include a letter from my doctor (even tho I told it wasn’t necessary) with my yearly medical, in case something comes up with my health. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat A5. Yes and no. It's often been a very frustrating process to discuss with HR. Often,it seems like they could care less,and eagerly want to use it as justification for getting me fired. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. My job doesn’t really have an HR dept. But my supervisor (who takes care of almost everything) is kind of aware of my health challenges, even tho I didn’t explicitly SAY it lol #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. I also made sure to include a letter from my doctor (even tho I told it wasn’t necessary) with my yearly medical, in case something comes up with my health. #LupusChat |
| Caring For Lupus @CaringForLupus A4 Lupus pueden afectar a toda la familia. Explicar esto a un niño puede ser abrumador, porque muchas veces creemos que no lo entenderá, pero es importante compartir la información adecuada. Cada familia necesita juzgar por sí misma lo que su hijo puede entender #LupusChat |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @Lupus_Chat A5 yes I can tell them about it but telling what I need is a different story. It depends. A few coworkers have known in the past but don't understand "I'm tired too" ..too much for 1 tweet lol #lupuschat |
| Caring For Lupus @CaringForLupus A4: Plan for the Conversation; when and where to have it. Plan what you want to say and how you intend to say it. Be aware of your tone and body language #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A6: There are regulations in place to assist those with serious health needs in the workplace. Learn more about FMLA (Family Medical Leave Act) here: https://t.co/K7SOfTxhHj #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 A5. I’ve had to. Mixed feelings about the level of disclosure as it relates to the people handling FEMA and the responsibilities of my job/career. Just because someone works in the FMLA dept doesn’t always mean they understand chronic illness. #LupusChat |
| Caring For Lupus @CaringForLupus A4: plan para la conversación; cuándo y dónde tenerlo. Planea lo que quieres decir y cómo piensas decirlo. Tenga en cuenta su tono y lenguaje corporal #LupusChat |
| #LupusChat @Lupus_Chat RT @_RachaelTV: @Lupus_Chat A5 yes I can tell them about it but telling what I need is a different story. It depends. A few coworkers have known in the past but don't understand "I'm tired too" ..too much for 1 tweet lol #lupuschat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A6: A6: There are regulations in place to assist those with serious health needs in the workplace. Learn more about FMLA (Family Medical Leave Act) here: https://t.co/K7SOfTxhHj #LupusChat |
| #LupusChat @Lupus_Chat RT @Pippilotta08: A5. I’ve had to. Mixed feelings about the level of disclosure as it relates to the people handling FEMA and the responsibilities of my job/career. Just because someone works in the FMLA dept doesn’t always mean they understand chronic illness. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A4: A4: plan para la conversación; cuándo y dónde tenerlo. Planea lo que quieres decir y cómo piensas decirlo. Tenga en cuenta su tono y lenguaje corporal #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. But I am aware of regulations in place if I need time off because of my health/appointments (FMLA, for ex) or the process to request accommodations, should I need them. #LupusChat |
| Caring For Lupus @CaringForLupus RT @iveyjanette_207: @Lupus_Chat A4. By explaining it in a calm,friendly manner. And by using words that a child can understand. And by reassuring them that it's not the end of the road. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A4: A4: We do a great disserviceto oir children by trying to “protect” them from seeing and knowing the harshness of our health conditions but I find that they have more respect and trust when you disclose. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A4: A4: I think children are far smarter than what we give them credit for. I advise to be plain, and honest. Don’t water down your discussion. Allow them to ask questions if they don’t understand something. & most importantly control your facial expression & emotions. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A4. As much as possible, use simple terms. Explain chronic. Explain things in terms of feelings. Be prepared to honestly answer lots of questions. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @CaringForLupus: A4: A4: Plan for the Conversation; when and where to have it. Plan what you want to say and how you intend to say it. Be aware of your tone and body language #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A6: A6: There are regulations in place to assist those with serious health needs in the workplace. Learn more about FMLA (Family Medical Leave Act) here: https://t.co/K7SOfTxhHj #LupusChat |
| #LupusChat @Lupus_Chat Q6: Qué tipo de leyes y regulaciones protectoras existen en relación con las información de salud en el lugar de trabajo y las ha discutido con su departamento de Recursos Humanos? #LupusChat https://t.co/p2E6j7SKbB |
| Tiffany ⁷ @TiffanyAndLupus A6: Also, remember to ask about Workplace Accomodations. If your health needs require assistive devices, naps, healthy snacks, dark lighting, etc. your job is mandated to provide what you need to work your best. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Agreed, Liz. #LupusChat |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 A6 HR IS over a very large organization. Most communication is thru email. No real personalization makes for a very stressful process when you do have to disclose/use your paid benefits. I’d like to learn more about accommodations but don’t know where to turn #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. But I am aware of regulations in place if I need time off because of my health/appointments (FMLA, for ex) or the process to request accommodations, should I need them. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A4 Lupus pueden afectar a toda la familia. Explicar esto a un niño puede ser abrumador, porque muchas veces creemos que no lo entenderá, pero es importante compartir la información adecuada. Cada familia necesita juzgar por sí misma lo que su hijo puede entender #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A4: A4: Plan for the Conversation; when and where to have it. Plan what you want to say and how you intend to say it. Be aware of your tone and body language #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Pippilotta08: A6 HR IS over a very large organization. Most communication is thru email. No real personalization makes for a very stressful process when you do have to disclose/use your paid benefits. I’d like to learn more about accommodations but don’t know where to turn #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A4. As much as possible, use simple terms. Explain chronic. Explain things in terms of feelings. Be prepared to honestly answer lots of questions. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat A4. By explaining it in a calm,friendly manner. And by using words that a child can understand. And by reassuring them that it's not the end of the road. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A6. But I am aware of regulations in place if I need time off because of my health/appointments (FMLA, for ex) or the process to request accommodations, should I need them. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Pippilotta08: A5. I’ve had to. Mixed feelings about the level of disclosure as it relates to the people handling FEMA and the responsibilities of my job/career. Just because someone works in the FMLA dept doesn’t always mean they understand chronic illness. #LupusChat |
 | RarasNoInvisibles @NoInvisibles RT @CaringForLupus: A1. Tuve que informar al departamento de HR sobre el diagnóstico de Miah porque me estaba quedando sin días . Estaba usando todos mis días de vacaciones para sus citas. Fui informado sobre la Ley FMLA. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Pippilotta08: A5. I’ve had to. Mixed feelings about the level of disclosure as it relates to the people handling FEMA and the responsibilities of my job/career. Just because someone works in the FMLA dept doesn’t always mean they understand chronic illness. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @_RachaelTV: @Lupus_Chat A5 yes I can tell them about it but telling what I need is a different story. It depends. A few coworkers have known in the past but don't understand "I'm tired too" ..too much for 1 tweet lol #lupuschat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @TiffanyAndLupus: A6: A6: There are regulations in place to assist those with serious health needs in the workplace. Learn more about FMLA (Family Medical Leave Act) here: https://t.co/K7SOfTxhHj #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A6. My job doesn’t really have an HR dept. But my supervisor (who takes care of almost everything) is kind of aware of my health challenges, even tho I didn’t explicitly SAY it lol #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A6: A6: Also, remember to ask about Workplace Accomodations. If your health needs require assistive devices, naps, healthy snacks, dark lighting, etc. your job is mandated to provide what you need to work your best. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q6: Q6: What kind of protective laws and regulations are in place concerning health disclosures in the workplace and have you discussed them with your Human Resources department? #LupusChat https://t.co/qQD3fMTtPo |
| #LupusChat @Lupus_Chat RT @Pippilotta08: A6 HR IS over a very large organization. Most communication is thru email. No real personalization makes for a very stressful process when you do have to disclose/use your paid benefits. I’d like to learn more about accommodations but don’t know where to turn #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @CaringForLupus: A1. I had a team meeting with my supervisors to share my daughter's diagnosis. In order for them to understand the reason why I was taking so many days off. #LupusChat |
| #LupusChat @Lupus_Chat #LupusChat #3 |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: There are many things to consider when deciding to disclose to others. We’ll cover how your current health status impacts your decision for Question 2. #LupusChat https://t.co/fKimh4a99Z |
| #LupusChat @Lupus_Chat #LupusChat A3 |
| RarasNoInvisibles @NoInvisibles RT @olgatgn: |
| RarasNoInvisibles @NoInvisibles RT @CaringForLupus: A2 Al comienzo del diagnóstico, pensé que no necesitábamos configurar un plan 504 en su escuela, pero eso cambió cuando noté que estaba experimentando fotosensibilidad Solicité una reunión con enfermeras escolares, los maestros para implementar un plan por los sintomas #LupusChat |
| #LupusChat @Lupus_Chat #LupusChat A2 |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: It’s Important to encourage children to be proactive about healthcare awareness in their schools and neighborhoods. Next, let’s discuss providing honest information to the kids in our lives. #LupusChat https://t.co/XtgZZIxBDe |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @Pippilotta08 Here are some resources that might help: https://t.co/Xkl6Nq7vki https://t.co/tgO4KJEmL6 #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Q3: Q3: Qué términos clínicos y no clínicos usa al explicar su salud a otros? #LupusChat https://t.co/YJS0mxOdMn |
| #LupusChat @Lupus_Chat @Pippilotta08 You bring up several really good points. Perhaps, we’ll create a discussion that specifically focuses on workplace accommodations, the process and the proper channels to go through in a future #LupusChat! |
| RarasNoInvisibles @NoInvisibles RT @CaringForLupus: A3. Uno de los síntomas de Miah es la fotosensibilidad, que es una reacción a la luz natural o artificial #LupusChat |
| #LupusChat @Lupus_Chat #LupusChat A1 |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Q4: Q4: De qué manera podemos tener una conversación constructiva sobre la salud y la enfermedad crónica con los niños de una manera significativa? #LupusChat https://t.co/LIq3Bx1pFX |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: @Pippilotta08 You bring up several really good points. Perhaps, we’ll create a discussion that specifically focuses on workplace accommodations, the process and the proper channels to go through in a future #LupusChat! |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Q5: Q5: Ha podido informar sobre su salud o necesidades de salud a compañeros de trabajo o empleador? #LupusChat https://t.co/k9IptfaVo7 |
| Nicole Shepard @thepcdiva RT @Xtel007: @Pippilotta08 Here are some resources that might help: @Pippilotta08 Here are some resources that might help: https://t.co/Xkl6Nq7vki https://t.co/tgO4KJEmL6 #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A6. My HR manager at work told me about FMLA. I used one week last month until my knee replacement surgery was postponed till October. Will go back out on FMLA I also know about HIPAA My doctors have me fill out a form once a year. #LupusChat |
| #LupusChat @Lupus_Chat Thanking each of you for joining our #LupusChat discussion on Disclosures on Health today. We truly appreciate you sharing your experiences and spending time with us! 💜 https://t.co/837CpUg6oH |
| RarasNoInvisibles @NoInvisibles RT @iveyjanette_207: @Lupus_Chat A5. Yes and no. It's often been a very frustrating process to discuss with HR. Often,it seems like they could care less,and eagerly want to use it as justification for getting me fired. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @CaringForLupus: A4 Lupus pueden afectar a toda la familia. Explicar esto a un niño puede ser abrumador, porque muchas veces creemos que no lo entenderá, pero es importante compartir la información adecuada. Cada familia necesita juzgar por sí misma lo que su hijo puede entender #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 VERY IMPORTANT!!! #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @CaringForLupus: A4: A4: plan para la conversación; cuándo y dónde tenerlo. Planea lo que quieres decir y cómo piensas decirlo. Tenga en cuenta su tono y lenguaje corporal #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Xtel007: A6. But I am aware of regulations in place if I need time off because of my health/appointments (FMLA, for ex) or the process to request accommodations, should I need them. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Thanking each of you for joining our #LupusChat discussion on Disclosures on Health today. We truly appreciate you sharing your experiences and spending time with us! 💜 https://t.co/837CpUg6oH |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 @Xtel007 Thank you!! Will def check these out. ❤️ #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A6. My HR manager at work told me about FMLA. I used one week last month until my knee replacement surgery was postponed till October. Will go back out on FMLA I also know about HIPAA My doctors have me fill out a form once a year. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Thanking each of you for joining our #LupusChat discussion on Disclosures on Health today. We truly appreciate you sharing your experiences and spending time with us! 💜 https://t.co/837CpUg6oH |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 That would be soooo helpful! #LupusChat |
| #LupusChat @Lupus_Chat Our next #LupusChat will be on Sunday, August 5th at 3pm Eastern Time. Save the date and stay tuned for our upcoming topic announcement next week! 📌🗓 https://t.co/ppWufykPmR |
| #LupusChat @Lupus_Chat #LupusChat A4 |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 RT @TiffanyAndLupus: A6: A6: Also, remember to ask about Workplace Accomodations. If your health needs require assistive devices, naps, healthy snacks, dark lighting, etc. your job is mandated to provide what you need to work your best. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Thank you everyone for joining and sharing! #LupusChat https://t.co/Yf4gMt2hRR |
| Rachael (rah-shell) Jay ⚡ @_RachaelTV @TiffanyAndLupus that sounds great but how do you actually convince them without sounding whiny? I've asked for a mask during construction and nothing #lupuschat |
| Nicole Shepard @thepcdiva RT @Lupus_Chat: Our next #LupusChat will be on Sunday, August 5th at 3pm Eastern Time. Save the date and stay tuned for our upcoming topic announcement next week! 📌🗓 https://t.co/ppWufykPmR |
| 🇭🇹🇺🇸Raindrops on roses 🇭🇹🇺🇸 @Pippilotta08 Great chatting with you guys as always. Have a great evening everyone. #LupusChat |
| #LupusChat @Lupus_Chat Enjoy the rest of your day & remember to practice a little (or a lot) selfcare today because besides #LupusChat it's also #SelfcareSunday! 💜✨ https://t.co/OOKh2XWQqR |
#LupusChat content from Twitter.