#LupusChat Transcript
Healthcare social media transcript of the #LupusChat hashtag.
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See #LupusChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | #LupusChat @Lupus_Chat Bienvenido a #LupusChat! Hoy discutiremos cómo tener conversaciones abiertas y honestas sobre la vida con Lupus. Juntos, trabajaremos para superar los desafíos de comunicarnos con otros sobre asuntos relacionados con nuestra salud. https://t.co/SLBG2iXJej |
| #LupusChat @Lupus_Chat Welcome to #LupusChat! Today we’ll discuss how to have open and honest conversations about life with Lupus. Together, let’s work on navigating the challenges of communicating with others about matters surrounding our health. https://t.co/Ujh5cZNli5 |
 | Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss how to have open and honest conversations about life with Lupus. Together, let’s work on navigating the challenges of communicating with others about matters surrounding our health. https://t.co/Ujh5cZNli5 |
| Tiffany ⁷ @TiffanyAndLupus It’s #LupusChat time! 🎉 https://t.co/1XyFKVLKoc |
| #LupusChat @Lupus_Chat Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| #LupusChat @Lupus_Chat Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
 | Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss how to have open and honest conversations about life with Lupus. Together, let’s work on navigating the challenges of communicating with others about matters surrounding our health. https://t.co/Ujh5cZNli5 |
| #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/YkhToLWWTB |
| #LupusChat @Lupus_Chat Click on the hashtag ~> #LupusChat to join us if you are new to @Lupus_Chat & would like to participate in our conversation today. https://t.co/IDXV5GSNnY |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
 | RaquelRoschell @raquelonpurpose It's #LupusChat time!! https://t.co/0v8GIcKmKT |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Click on the hashtag ~> #LupusChat to join us if you are new to @Lupus_Chat & would like to participate in our conversation today. https://t.co/IDXV5GSNnY |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Click on the hashtag ~> #LupusChat to join us if you are new to @Lupus_Chat & would like to participate in our conversation today. https://t.co/IDXV5GSNnY |
| #LupusChat @Lupus_Chat Añadir #LupusChat a cada uno de sus tweets y utilice A1, A2, etc. para responder a cada pregunta. https://t.co/KK0LqMyhPf |
| #LupusChat @Lupus_Chat Add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/mNTGsKC0wJ |
| Friends AgainstLupus @AgainstLupus 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/YkhToLWWTB |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/mNTGsKC0wJ |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/mNTGsKC0wJ |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/mNTGsKC0wJ |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Añadir #LupusChat a cada uno de sus tweets y utilice A1, A2, etc. para responder a cada pregunta. https://t.co/KK0LqMyhPf |
 | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss how to have open and honest conversations about life with Lupus. Together, let’s work on navigating the challenges of communicating with others about matters surrounding our health. https://t.co/Ujh5cZNli5 |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos cómo tener conversaciones abiertas y honestas sobre la vida con Lupus. Juntos, trabajaremos para superar los desafíos de comunicarnos con otros sobre asuntos relacionados con nuestra salud. https://t.co/SLBG2iXJej |
| #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/6DcwcLsMhl |
| #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/gENmKBiBVi |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: It's #LupusChat time!! https://t.co/0v8GIcKmKT |
| 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/gENmKBiBVi |
| Friends AgainstLupus @AgainstLupus 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/gENmKBiBVi |
| Friends AgainstLupus @AgainstLupus RT @raquelonpurpose: It's #LupusChat time!! https://t.co/0v8GIcKmKT |
 | THINA—OGKPOPSTAN.COM @ogkpopstan98 Considering I’ve been in and out of the hospital 3x in a month, almost dying again, and currently still dealing with lupus issues, I’ll participate in this #Lupuschat😅 |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 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/gENmKBiBVi |
 | Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss how to have open and honest conversations about life with Lupus. Together, let’s work on navigating the challenges of communicating with others about matters surrounding our health. https://t.co/Ujh5cZNli5 |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos cómo tener conversaciones abiertas y honestas sobre la vida con Lupus. Juntos, trabajaremos para superar los desafíos de comunicarnos con otros sobre asuntos relacionados con nuestra salud. https://t.co/SLBG2iXJej |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: It’s #LupusChat time! 🎉 https://t.co/1XyFKVLKoc |
| 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 @Lupus_Chat: Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Click on the hashtag ~> #LupusChat to join us if you are new to @Lupus_Chat & would like to participate in our conversation today. https://t.co/IDXV5GSNnY |
| 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/YkhToLWWTB |
| Carly by Nature @SynceNerd_Carli RT @raquelonpurpose: It's #LupusChat time!! https://t.co/0v8GIcKmKT |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Añadir #LupusChat a cada uno de sus tweets y utilice A1, A2, etc. para responder a cada pregunta. https://t.co/KK0LqMyhPf |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/mNTGsKC0wJ |
| 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/gENmKBiBVi |
 | Caring For Lupus @CaringForLupus RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss how to have open and honest conversations about life with Lupus. Together, let’s work on navigating the challenges of communicating with others about matters surrounding our health. https://t.co/Ujh5cZNli5 |
| 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/6DcwcLsMhl |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos cómo tener conversaciones abiertas y honestas sobre la vida con Lupus. Juntos, trabajaremos para superar los desafíos de comunicarnos con otros sobre asuntos relacionados con nuestra salud. https://t.co/SLBG2iXJej |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: Considering I’ve been in and out of the hospital 3x in a month, almost dying again, and currently still dealing with lupus issues, I’ll participate in this #Lupuschat😅 |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Click on the hashtag ~> #LupusChat to join us if you are new to @Lupus_Chat & would like to participate in our conversation today. https://t.co/IDXV5GSNnY |
| Carly by Nature @SynceNerd_Carli RT @xthina_etc: Considering I’ve been in and out of the hospital 3x in a month, almost dying again, and currently still dealing with lupus issues, I’ll participate in this #Lupuschat😅 |
| #LupusChat @Lupus_Chat Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and what would be the perfect way to end your day? https://t.co/ZAOMUDqP4o |
| 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/YkhToLWWTB |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Añadir #LupusChat a cada uno de sus tweets y utilice A1, A2, etc. para responder a cada pregunta. https://t.co/KK0LqMyhPf |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/mNTGsKC0wJ |
| Caring For Lupus @CaringForLupus 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/gENmKBiBVi |
| Caring For Lupus @CaringForLupus 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/6DcwcLsMhl |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and what would be the perfect way to end your day? https://t.co/ZAOMUDqP4o |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and what would be the perfect way to end your day? https://t.co/ZAOMUDqP4o |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: Hey #LupusChat fam, I wont be joining today. Full disclosure: Hey #LupusChat fam, I wont be joining today. Full disclosure: I'm at the ER. I should be okay so no worries. I'll boost your tweets as time allows. We planned a dope chat for y'all. Hope you enjoy!💜 https://t.co/OjRTBA1kBb |
| #LupusChat @Lupus_Chat RT @xthina_etc: Considering I’ve been in and out of the hospital 3x in a month, almost dying again, and currently still dealing with lupus issues, I’ll participate in this #Lupuschat😅 |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: It's #LupusChat time!! https://t.co/0v8GIcKmKT |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Hi #LupusChat fam, I’m Christele, one of your co-hosts. I was diagnosed almost 13 years ago now (but I’m gonna keep saying 12 coz I don’t like odd numbers). Perfect way to end my day: Honey ginger tea, melatonin, a nice and heavy face cream. |
| Tiffany ⁷ @TiffanyAndLupus Hi! I’m Tiffany, your #LupusChat co-host from New York City. This month is my 10th year surviving Lupus. The perfect way to end my day is when I’ve got a variety of sweet snacks to satisfy my nighttime sweet tooth. #LupusChat https://t.co/cJwLBOCNRs |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and what would be the perfect way to end your day? https://t.co/ZAOMUDqP4o |
| #LupusChat @Lupus_Chat RT @Xtel007: Hi #LupusChat fam, I’m Christele, one of your co-hosts. I was diagnosed almost 13 years ago now (but I’m gonna keep saying 12 coz I don’t like odd numbers). Perfect way to end my day: Honey ginger tea, melatonin, a nice and heavy face cream. |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: Hi! I’m Tiffany, your #LupusChat co-host from New York City. This month is my 10th year surviving Lupus. The perfect way to end my day is when I’ve got a variety of sweet snacks to satisfy my nighttime sweet tooth. #LupusChat https://t.co/cJwLBOCNRs |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: Hi #LupusChat fam, I’m Christele, one of your co-hosts. I was diagnosed almost 13 years ago now (but I’m gonna keep saying 12 coz I don’t like odd numbers). Perfect way to end my day: Honey ginger tea, melatonin, a nice and heavy face cream. |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 - thina - Houston TX - I love my dog, scary movies, Reese’s and sour candy, graphic design, and lots of coffee - perfect way to end my day: knowing i have another day to enjoy👍🏼 #Lupuschat https://t.co/FHNVE7s2h7 |
| #LupusChat @Lupus_Chat RT @xthina_etc: - thina - Houston TX - I love my dog, scary movies, Reese’s and sour candy, graphic design, and lots of coffee - perfect way to end my day: knowing i have another day to enjoy👍🏼 #Lupuschat https://t.co/FHNVE7s2h7 |
| #LupusChat @Lupus_Chat Comencemos nuestra fiesta #LupusChat! Puedes compartir tu nombre, de dónde eres, un poco sobre ti y cuál sería la manera perfecta de terminar tu día? https://t.co/FSx7SNekXd |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: Hi! I’m Tiffany, your #LupusChat co-host from New York City. This month is my 10th year surviving Lupus. The perfect way to end my day is when I’ve got a variety of sweet snacks to satisfy my nighttime sweet tooth. #LupusChat https://t.co/cJwLBOCNRs |
| Tiffany ⁷ @TiffanyAndLupus @xthina_etc Welcome back, Thina! It’s great to see you today at #LupusChat. 💓 |
| RaquelRoschell @raquelonpurpose @Lupus_Chat Hi! Raquel from Texas. Living with Lupus and Arthritis. Perfect way to end a day...a great meal then relaxing on my couch watching a good show or listening to good music. #LupusChat |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat Hi! Raquel from Texas. Living with Lupus and Arthritis. Perfect way to end a day...a great meal then relaxing on my couch watching a good show or listening to good music. #LupusChat |
| Caring For Lupus @CaringForLupus RT @xthina_etc: Considering I’ve been in and out of the hospital 3x in a month, almost dying again, and currently still dealing with lupus issues, I’ll participate in this #Lupuschat😅 |
| Caring For Lupus @CaringForLupus RT @Xtel007: Hi #LupusChat fam, I’m Christele, one of your co-hosts. I was diagnosed almost 13 years ago now (but I’m gonna keep saying 12 coz I don’t like odd numbers). Perfect way to end my day: Honey ginger tea, melatonin, a nice and heavy face cream. |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: Hi! I’m Tiffany, your #LupusChat co-host from New York City. This month is my 10th year surviving Lupus. The perfect way to end my day is when I’ve got a variety of sweet snacks to satisfy my nighttime sweet tooth. #LupusChat https://t.co/cJwLBOCNRs |
| Caring For Lupus @CaringForLupus RT @xthina_etc: - thina - Houston TX - I love my dog, scary movies, Reese’s and sour candy, graphic design, and lots of coffee - perfect way to end my day: knowing i have another day to enjoy👍🏼 #Lupuschat https://t.co/FHNVE7s2h7 |
| Caring For Lupus @CaringForLupus RT @raquelonpurpose: @Lupus_Chat Hi! Raquel from Texas. Living with Lupus and Arthritis. Perfect way to end a day...a great meal then relaxing on my couch watching a good show or listening to good music. #LupusChat |
| Caring For Lupus @CaringForLupus RT @SynceNerd_Carli: Hey #LupusChat fam, I wont be joining today. Full disclosure: Hey #LupusChat fam, I wont be joining today. Full disclosure: I'm at the ER. I should be okay so no worries. I'll boost your tweets as time allows. We planned a dope chat for y'all. Hope you enjoy!💜 https://t.co/OjRTBA1kBb |
 | Kate Sattler | Sweet Freeze @katesattler @Lupus_Chat I’m Kate in Portland. I’m a musician and love movies. Diagnosed w SLE & Discoid in 2018. I love ending my day with a hot bath. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @xthina_etc thank you! I definitely plan to celebrate 10 years of life after lupus this month! #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @katesattler: @Lupus_Chat I’m Kate in Portland. I’m a musician and love movies. Diagnosed w SLE & Discoid in 2018. I love ending my day with a hot bath. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: @Lupus_Chat Hi! Raquel from Texas. Living with Lupus and Arthritis. Perfect way to end a day...a great meal then relaxing on my couch watching a good show or listening to good music. #LupusChat |
| #LupusChat @Lupus_Chat Están todos listos? Aquí viene la pregunta 1! (Q1) #LupusChat https://t.co/tljp42tWEz |
| #LupusChat @Lupus_Chat Is everyone ready? Here comes Question 1! #LupusChat https://t.co/0upkh7M2mT |
| #LupusChat @Lupus_Chat RT @katesattler: @Lupus_Chat I’m Kate in Portland. I’m a musician and love movies. Diagnosed w SLE & Discoid in 2018. I love ending my day with a hot bath. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Is everyone ready? Here comes Question 1! #LupusChat https://t.co/0upkh7M2mT |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Is everyone ready? Here comes Question 1! #LupusChat https://t.co/0upkh7M2mT |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Is everyone ready? Here comes Question 1! #LupusChat https://t.co/0upkh7M2mT |
| #LupusChat @Lupus_Chat Q1: Cómo te sientes cuando otros te preguntan sobre la vida con Lupus? #LupusChat https://t.co/D8L2ey3kOq |
| #LupusChat @Lupus_Chat Q1: How do you feel when others ask you about life with Lupus? #LupusChat https://t.co/SDd5IYF5Zc |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Están todos listos? Aquí viene la pregunta 1! (Q1) #LupusChat https://t.co/tljp42tWEz |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 RT @Lupus_Chat: Q1: Q1: How do you feel when others ask you about life with Lupus? #LupusChat https://t.co/SDd5IYF5Zc |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. Theoretically, I’m always open to educating people. But honestly, it’s a bit easier to do nowadays when I’m healthy-ish versus when I was going through the big flares. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q1: Q1: How do you feel when others ask you about life with Lupus? #LupusChat https://t.co/SDd5IYF5Zc |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q1: Q1: How do you feel when others ask you about life with Lupus? #LupusChat https://t.co/SDd5IYF5Zc |
 | Kathy Wingard 🇺🇦 ☮️ @KathyWingard RT @Lupus_Chat: Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and what would be the perfect way to end your day? https://t.co/ZAOMUDqP4o |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q1: Q1: Cómo te sientes cuando otros te preguntan sobre la vida con Lupus? #LupusChat https://t.co/D8L2ey3kOq |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. Theoretically, I’m always open to educating people. But honestly, it’s a bit easier to do nowadays when I’m healthy-ish versus when I was going through the big flares. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @Xtel007: A1. Theoretically, I’m always open to educating people. But honestly, it’s a bit easier to do nowadays when I’m healthy-ish versus when I was going through the big flares. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. Theoretically, I’m always open to educating people. But honestly, it’s a bit easier to do nowadays when I’m healthy-ish versus when I was going through the big flares. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A1. When people ask about “life with Lupus” specifically (instead of what is Lupus), to me that means they’re interested in my personal experience, that they care how *I* deal with the whole thing. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
| Kate Sattler | Sweet Freeze @katesattler @Lupus_Chat A1: So grateful for the interest ❤️ but lonely bc so the gap in understanding is so big. #LupusChat |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 A1 I feel like I can’t exactly explain it in a way where it’s really understood but then again, I sometimes don’t understand it myself so🤪 #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A1. When people ask about “life with Lupus” specifically (instead of what is Lupus), to me that means they’re interested in my personal experience, that they care how *I* deal with the whole thing. #LupusChat |
| #LupusChat @Lupus_Chat RT @katesattler: @Lupus_Chat A1: @Lupus_Chat A1: So grateful for the interest ❤️ but lonely bc so the gap in understanding is so big. #LupusChat |
| #LupusChat @Lupus_Chat RT @xthina_etc: A1 I feel like I can’t exactly explain it in a way where it’s really understood but then again, I sometimes don’t understand it myself so🤪 #LupusChat |
| RaquelRoschell @raquelonpurpose @SynceNerd_Carli Sending well wishes your way💜. Keep us posted. #LupusChat |
| Caring For Lupus @CaringForLupus Hi.....I'm Elizabeth from NJ and a #LupusChat co-host. My twelve year old daughter is a Lupus Warrior. My husband says that his perfect way to end the day is when he gets home and spends time with our little ones https://t.co/XuBcG8cxyH |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and what would be the perfect way to end your day? https://t.co/ZAOMUDqP4o |
| #LupusChat @Lupus_Chat RT @CaringForLupus: Hi.....I'm Elizabeth from NJ and a #LupusChat co-host. My twelve year old daughter is a Lupus Warrior. My husband says that his perfect way to end the day is when he gets home and spends time with our little ones https://t.co/XuBcG8cxyH |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q1: Q1: How do you feel when others ask you about life with Lupus? #LupusChat https://t.co/SDd5IYF5Zc |
| Caring For Lupus @CaringForLupus RT @xthina_etc: A1 I feel like I can’t exactly explain it in a way where it’s really understood but then again, I sometimes don’t understand it myself so🤪 #LupusChat |
| Caring For Lupus @CaringForLupus RT @katesattler: @Lupus_Chat A1: @Lupus_Chat A1: So grateful for the interest ❤️ but lonely bc so the gap in understanding is so big. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A1. When people ask about “life with Lupus” specifically (instead of what is Lupus), to me that means they’re interested in my personal experience, that they care how *I* deal with the whole thing. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: Hi.....I'm Elizabeth from NJ and a #LupusChat co-host. My twelve year old daughter is a Lupus Warrior. My husband says that his perfect way to end the day is when he gets home and spends time with our little ones https://t.co/XuBcG8cxyH |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A1. Theoretically, I’m always open to educating people. But honestly, it’s a bit easier to do nowadays when I’m healthy-ish versus when I was going through the big flares. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q1: Q1: Cómo te sientes cuando otros te preguntan sobre la vida con Lupus? #LupusChat https://t.co/D8L2ey3kOq |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: A1 I feel like I can’t exactly explain it in a way where it’s really understood but then again, I sometimes don’t understand it myself so🤪 #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @katesattler: @Lupus_Chat A1: @Lupus_Chat A1: So grateful for the interest ❤️ but lonely bc so the gap in understanding is so big. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A1. When people ask about “life with Lupus” specifically (instead of what is Lupus), to me that means they’re interested in my personal experience, that they care how *I* deal with the whole thing. #LupusChat |
 | Reading, Gardening. Surviving @MichellePraiz RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
 | LupieSoftballMom🥎 @av8trwife RT @katesattler: @Lupus_Chat A1: @Lupus_Chat A1: So grateful for the interest ❤️ but lonely bc so the gap in understanding is so big. #LupusChat |
| #LupusChat @Lupus_Chat Parece que pasamos por una miríada de sentimientos cuando nos preguntan sobre nuestras enfermedades crónicas. Continuemos explorando la forma en que navegamos nuestras interacciones con otros en la Pregunta 2. #LupusChat https://t.co/mtnvoWUCrK |
| #LupusChat @Lupus_Chat It seems that we go through a myriad of feelings when asked about our chronic illnesses. Let’s continue to explore the way we navigate our interactions with others in Question 2. #LupusChat https://t.co/yGLfvywVY4 |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @xthina_etc: A1 I feel like I can’t exactly explain it in a way where it’s really understood but then again, I sometimes don’t understand it myself so🤪 #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @CaringForLupus: Hi.....I'm Elizabeth from NJ and a #LupusChat co-host. My twelve year old daughter is a Lupus Warrior. My husband says that his perfect way to end the day is when he gets home and spends time with our little ones https://t.co/XuBcG8cxyH |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: It seems that we go through a myriad of feelings when asked about our chronic illnesses. Let’s continue to explore the way we navigate our interactions with others in Question 2. #LupusChat https://t.co/yGLfvywVY4 |
| Friends AgainstLupus @AgainstLupus RT @katesattler: @Lupus_Chat A1: @Lupus_Chat A1: So grateful for the interest ❤️ but lonely bc so the gap in understanding is so big. #LupusChat |
 | Debra Carroll @todebra I spent a lot of time not talking about it because it made me feel "less than," but now I welcome the opportunity to educate others. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
 | Nikki †♡☾• ˚ @Nicolette_BABEY RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
| #LupusChat @Lupus_Chat Q2: A usted le parece que otros proyectan sus ideas sobre cómo es la vida con una enfermedad crónica? Si es así, cómo respondes? #LupusChat https://t.co/iIUGkxW0kB |
| #LupusChat @Lupus_Chat Q2: Do you find that others project their ideas of what life with a chronic illness is like, onto you? If so, how do you respond? #LupusChat https://t.co/qRnpNsLvpz |
| Friends AgainstLupus @AgainstLupus RT @Xtel007: A1. When people ask about “life with Lupus” specifically (instead of what is Lupus), to me that means they’re interested in my personal experience, that they care how *I* deal with the whole thing. #LupusChat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A1: Cornered sometimes. Like I'm on trials at other times. When the questions are centered more on how I'm doing..real concern..I'm appreciative. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: It seems that we go through a myriad of feelings when asked about our chronic illnesses. Let’s continue to explore the way we navigate our interactions with others in Question 2. #LupusChat https://t.co/yGLfvywVY4 |
 | PrincessCarna 🦄🦄🦄 @PrincessCarna @Lupus_Chat Ans 1: I used to feel extremely offended. I felt why are you asking...you don’t care. After a few major bouts I realize I lost most of my friends because I was actively self-sabotaging. I now realize people do care and I am a vast amount of knowledge for many. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q2: Q2: Do you find that others project their ideas of what life with a chronic illness is like, onto you? If so, how do you respond? #LupusChat https://t.co/qRnpNsLvpz |
| #LupusChat @Lupus_Chat RT @todebra: I spent a lot of time not talking about it because it made me feel "less than," but now I welcome the opportunity to educate others. #LupusChat |
| Caring For Lupus @CaringForLupus RT @todebra: I spent a lot of time not talking about it because it made me feel "less than," but now I welcome the opportunity to educate others. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q2: Q2: A usted le parece que otros proyectan sus ideas sobre cómo es la vida con una enfermedad crónica? Si es así, cómo respondes? #LupusChat https://t.co/iIUGkxW0kB |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A1: @Lupus_Chat A1: Cornered sometimes. Like I'm on trials at other times. When the questions are centered more on how I'm doing..real concern..I'm appreciative. #LupusChat |
| Caring For Lupus @CaringForLupus RT @raquelonpurpose: @Lupus_Chat A1: @Lupus_Chat A1: Cornered sometimes. Like I'm on trials at other times. When the questions are centered more on how I'm doing..real concern..I'm appreciative. #LupusChat |
| #LupusChat @Lupus_Chat RT @PrincessCarna: @Lupus_Chat Ans 1: @Lupus_Chat Ans 1: I used to feel extremely offended. I felt why are you asking...you don’t care. After a few major bouts I realize I lost most of my friends because I was actively self-sabotaging. I now realize people do care and I am a vast amount of knowledge for many. #LupusChat |
| Caring For Lupus @CaringForLupus RT @PrincessCarna: @Lupus_Chat Ans 1: @Lupus_Chat Ans 1: I used to feel extremely offended. I felt why are you asking...you don’t care. After a few major bouts I realize I lost most of my friends because I was actively self-sabotaging. I now realize people do care and I am a vast amount of knowledge for many. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q2: Q2: Do you find that others project their ideas of what life with a chronic illness is like, onto you? If so, how do you respond? #LupusChat https://t.co/qRnpNsLvpz |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q2: Q2: Do you find that others project their ideas of what life with a chronic illness is like, onto you? If so, how do you respond? #LupusChat https://t.co/qRnpNsLvpz |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q2: Q2: Do you find that others project their ideas of what life with a chronic illness is like, onto you? If so, how do you respond? #LupusChat https://t.co/qRnpNsLvpz |
| Tiffany ⁷ @TiffanyAndLupus RT @todebra: I spent a lot of time not talking about it because it made me feel "less than," but now I welcome the opportunity to educate others. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. People definitely do not get it, especially the unpredictability of it all. They don’t get that I can be fine one day and entirely not the next, and make comments about what I should or should not be able to do. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A2: People don’t always vocalize their assumptions about what they imagine my life with lupus is like. Sometimes I can tell when someone does if they make snide remarks about my mobility or my choices to put my self/health first. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @PrincessCarna: @Lupus_Chat Ans 1: @Lupus_Chat Ans 1: I used to feel extremely offended. I felt why are you asking...you don’t care. After a few major bouts I realize I lost most of my friends because I was actively self-sabotaging. I now realize people do care and I am a vast amount of knowledge for many. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: @Lupus_Chat A1: @Lupus_Chat A1: Cornered sometimes. Like I'm on trials at other times. When the questions are centered more on how I'm doing..real concern..I'm appreciative. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A2. People definitely do not get it, especially the unpredictability of it all. They don’t get that I can be fine one day and entirely not the next, and make comments about what I should or should not be able to do. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A2: A2: People don’t always vocalize their assumptions about what they imagine my life with lupus is like. Sometimes I can tell when someone does if they make snide remarks about my mobility or my choices to put my self/health first. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A2. I’ve gotten comments (or accusatory attitude) from people who don’t get why I’m still (either think I’m lying or that it’s my fault). When this happens, I know to give that person some distance. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A2: Once I hear a snide remark made about my life with lupus based on assumptions, I snap back. I let them know that they are indeed WRONG & caution them not to do it again. Some are apologetic. Others aren’t & I limit my time with them. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @raquelonpurpose: @Lupus_Chat A1: @Lupus_Chat A1: Cornered sometimes. Like I'm on trials at other times. When the questions are centered more on how I'm doing..real concern..I'm appreciative. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @PrincessCarna: @Lupus_Chat Ans 1: @Lupus_Chat Ans 1: I used to feel extremely offended. I felt why are you asking...you don’t care. After a few major bouts I realize I lost most of my friends because I was actively self-sabotaging. I now realize people do care and I am a vast amount of knowledge for many. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A2: A2: Once I hear a snide remark made about my life with lupus based on assumptions, I snap back. I let them know that they are indeed WRONG & caution them not to do it again. Some are apologetic. Others aren’t & I limit my time with them. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A2. I’ve gotten comments (or accusatory attitude) from people who don’t get why I’m still (either think I’m lying or that it’s my fault). When this happens, I know to give that person some distance. #LupusChat |
| #LupusChat @Lupus_Chat Recuerda añadir #LupusChat a cada uno de tus tweets y usa A1, A2, etc. para responder a cada pregunta. https://t.co/yFKz1Yhkrt |
| #LupusChat @Lupus_Chat Remember to add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/XPLWBrNuYs |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A2. I’ve gotten comments (or accusatory attitude) from people who don’t get why I’m still (either think I’m lying or that it’s my fault). When this happens, I know to give that person some distance. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A2. I’ve gotten comments (or accusatory attitude) from people who don’t get why I’m still (either think I’m lying or that it’s my fault). When this happens, I know to give that person some distance. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A2: A2: Once I hear a snide remark made about my life with lupus based on assumptions, I snap back. I let them know that they are indeed WRONG & caution them not to do it again. Some are apologetic. Others aren’t & I limit my time with them. #LupusChat |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 A2 luckily I haven’t had people try to tell me how to live my life w/lupus. But I’ve seen enough opinions online to not care for it😂 I had a lady last week shame me for saying others who ignorantly spoke of prednisone “idiots” for being insensitive & quick to judge🤷🏼♀️ #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A2: A2: People don’t always vocalize their assumptions about what they imagine my life with lupus is like. Sometimes I can tell when someone does if they make snide remarks about my mobility or my choices to put my self/health first. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A2. People definitely do not get it, especially the unpredictability of it all. They don’t get that I can be fine one day and entirely not the next, and make comments about what I should or should not be able to do. #LupusChat |
| Caring For Lupus @CaringForLupus RT @xthina_etc: A2 luckily I haven’t had people try to tell me how to live my life w/lupus. But I’ve seen enough opinions online to not care for it😂 I had a lady last week shame me for saying others who ignorantly spoke of prednisone “idiots” for being insensitive & quick to judge🤷🏼♀️ #LupusChat |
| #LupusChat @Lupus_Chat RT @xthina_etc: A2 luckily I haven’t had people try to tell me how to live my life w/lupus. But I’ve seen enough opinions online to not care for it😂 I had a lady last week shame me for saying others who ignorantly spoke of prednisone “idiots” for being insensitive & quick to judge🤷🏼♀️ #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @super_von welcome to #LupusChat Javon! We're so glad to have you. Hope your conference goes well. |
| #LupusChat @Lupus_Chat Las personas a menudo sobrepasan los límites personales y fuerzan sus opiniones a los demás. Analicemos cómo esto afecta a las personas que viven con enfermedades crónicas para la pregunta 3. #LupusChat https://t.co/kKk2gG9QE5 |
| #LupusChat @Lupus_Chat People often overstep personal boundaries and force their opinions onto others. Let’s discuss how this impacts people living with chronic illness for Question 3. #LupusChat https://t.co/PgFH7mp0AA |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Remember to add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/XPLWBrNuYs |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Remember to add #LupusChat to each of your tweets & use A1, A2, etc to answer each question. https://t.co/XPLWBrNuYs |
| #LupusChat @Lupus_Chat Q3: Cuál es su reacción general cuando alguien a quien no ha revelado su enfermedad hace comentarios que van encontra de los límites que usted ha establecido? #LupusChat https://t.co/dENfZ3G4NR |
| #LupusChat @Lupus_Chat Q3: What is your general reaction when someone you haven’t disclosed your illness to makes comments imposing upon the limits you’ve set for yourself? #LupusChat https://t.co/IFPDKDwmjX |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A2: A2: People don’t always vocalize their assumptions about what they imagine my life with lupus is like. Sometimes I can tell when someone does if they make snide remarks about my mobility or my choices to put my self/health first. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: A2 luckily I haven’t had people try to tell me how to live my life w/lupus. But I’ve seen enough opinions online to not care for it😂 I had a lady last week shame me for saying others who ignorantly spoke of prednisone “idiots” for being insensitive & quick to judge🤷🏼♀️ #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A2. People definitely do not get it, especially the unpredictability of it all. They don’t get that I can be fine one day and entirely not the next, and make comments about what I should or should not be able to do. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q3: Q3: What is your general reaction when someone you haven’t disclosed your illness to makes comments imposing upon the limits you’ve set for yourself? #LupusChat https://t.co/IFPDKDwmjX |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q3: Q3: Cuál es su reacción general cuando alguien a quien no ha revelado su enfermedad hace comentarios que van encontra de los límites que usted ha establecido? #LupusChat https://t.co/dENfZ3G4NR |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: People often overstep personal boundaries and force their opinions onto others. Let’s discuss how this impacts people living with chronic illness for Question 3. #LupusChat https://t.co/PgFH7mp0AA |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q3: Q3: What is your general reaction when someone you haven’t disclosed your illness to makes comments imposing upon the limits you’ve set for yourself? #LupusChat https://t.co/IFPDKDwmjX |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q3: Q3: What is your general reaction when someone you haven’t disclosed your illness to makes comments imposing upon the limits you’ve set for yourself? #LupusChat https://t.co/IFPDKDwmjX |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A3. I know it might be easier for people to understand if they understand what’s going on with me. Some people will never understand though, so for the most part I’m careful with the amount of energy I use trying. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A3: Frustration is my first reaction when someone unknowingly imposes on the limits my health requires. It’s not easy to stand up for yourself in situations where someone isn’t knowledgable about my health condition. #Lupuschat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @xthina_etc: A2 luckily I haven’t had people try to tell me how to live my life w/lupus. But I’ve seen enough opinions online to not care for it😂 I had a lady last week shame me for saying others who ignorantly spoke of prednisone “idiots” for being insensitive & quick to judge🤷🏼♀️ #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A3. It just makes me frustrated, because ultimately I should not have to convince people about what I do with MY life. And it’s kind of hard, when the conflict comes up, to then bring up my diagnosis/experiences. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A3. It just makes me frustrated, because ultimately I should not have to convince people about what I do with MY life. And it’s kind of hard, when the conflict comes up, to then bring up my diagnosis/experiences. #LupusChat |
| PrincessCarna 🦄🦄🦄 @PrincessCarna Ans 2: Some think all chronic illness is exactly alike. I find myself repeating everyone has a story and everyone’s path is different. I still work..people often relay to me it can’t be that bad. I’ve had to reform from being an extremely private person to stop this.#LupusChat |
| LupieSoftballMom🥎 @av8trwife Honestly, frustrated. The longer I live with #lupus I find I often don't have the right words to accurately describe or express how it affects me, my family & my life. Too much us still unknown or misunderstood and it's difficult to get past those issues. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @av8trwife: Honestly, frustrated. The longer I live with #lupus I find I often don't have the right words to accurately describe or express how it affects me, my family & my life. Too much us still unknown or misunderstood and it's difficult to get past those issues. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @PrincessCarna: Ans 2: Ans 2: Some think all chronic illness is exactly alike. I find myself repeating everyone has a story and everyone’s path is different. I still work..people often relay to me it can’t be that bad. I’ve had to reform from being an extremely private person to stop this.#LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @TiffanyAndLupus: A3: A3: Frustration is my first reaction when someone unknowingly imposes on the limits my health requires. It’s not easy to stand up for yourself in situations where someone isn’t knowledgable about my health condition. #Lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A3. I know it might be easier for people to understand if they understand what’s going on with me. Some people will never understand though, so for the most part I’m careful with the amount of energy I use trying. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Q2: Q2: Do you find that others project their ideas of what life with a chronic illness is like, onto you? If so, how do you respond? #LupusChat https://t.co/qRnpNsLvpz |
| #LupusChat @Lupus_Chat RT @av8trwife: Honestly, frustrated. The longer I live with #lupus I find I often don't have the right words to accurately describe or express how it affects me, my family & my life. Too much us still unknown or misunderstood and it's difficult to get past those issues. #LupusChat |
| #LupusChat @Lupus_Chat RT @PrincessCarna: Ans 2: Ans 2: Some think all chronic illness is exactly alike. I find myself repeating everyone has a story and everyone’s path is different. I still work..people often relay to me it can’t be that bad. I’ve had to reform from being an extremely private person to stop this.#LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @av8trwife: Honestly, frustrated. The longer I live with #lupus I find I often don't have the right words to accurately describe or express how it affects me, my family & my life. Too much us still unknown or misunderstood and it's difficult to get past those issues. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A3. It just makes me frustrated, because ultimately I should not have to convince people about what I do with MY life. And it’s kind of hard, when the conflict comes up, to then bring up my diagnosis/experiences. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: Frustration is my first reaction when someone unknowingly imposes on the limits my health requires. It’s not easy to stand up for yourself in situations where someone isn’t knowledgable about my health condition. #Lupuschat |
| #LupusChat @Lupus_Chat RT @Xtel007: A3. I know it might be easier for people to understand if they understand what’s going on with me. Some people will never understand though, so for the most part I’m careful with the amount of energy I use trying. #LupusChat |
 | Adri @supacooladri @Lupus_Chat Hi I'm Adriana from San Diego, California dianosged with lupus sle in 1999. I love ending my day with some silly reality TV! #lupuschat |
| #LupusChat @Lupus_Chat Revelar detalles sobre nuestra enfermedad crónica puede ser difícil por muchas razones. Para la pregunta 4 examinaremos formas de ayudar a que la experiencia sea un poco más fácil. #LupusChat https://t.co/RMtMuGHlJ4 |
| #LupusChat @Lupus_Chat Disclosing details about our chronic illness can be difficult for many reasons. For Question 4 we will examine ways to help make the experience a bit easier. #LupusChat https://t.co/5XfsnR9Z2b |
| #LupusChat @Lupus_Chat Q4: Cuando conoces a alguien nuevo, cuáles son algunas formas de revelar tu enfermedad sin romper tus límites? #LupusChat https://t.co/IqHT22kCww |
| #LupusChat @Lupus_Chat Q4: When introducing yourself to someone new, what are some ways to disclose your illness without breaching your boundaries? #LupusChat https://t.co/7DQNuHkUSq |
| Tiffany ⁷ @TiffanyAndLupus RT @supacooladri: @Lupus_Chat Hi I'm Adriana from San Diego, California dianosged with lupus sle in 1999. I love ending my day with some silly reality TV! #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Disclosing details about our chronic illness can be difficult for many reasons. For Question 4 we will examine ways to help make the experience a bit easier. #LupusChat https://t.co/5XfsnR9Z2b |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Disclosing details about our chronic illness can be difficult for many reasons. For Question 4 we will examine ways to help make the experience a bit easier. #LupusChat https://t.co/5XfsnR9Z2b |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A4. It depends on where I am in my journey, honestly. Like I said, when I’m a bit more removed from faring it’s easier to talk about. But in the midst of a flare, I feel too vulnerable. #LupusChat |
| #LupusChat @Lupus_Chat RT @supacooladri: @Lupus_Chat Hi I'm Adriana from San Diego, California dianosged with lupus sle in 1999. I love ending my day with some silly reality TV! #lupuschat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Disclosing details about our chronic illness can be difficult for many reasons. For Question 4 we will examine ways to help make the experience a bit easier. #LupusChat https://t.co/5XfsnR9Z2b |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A3 : I advocate for myself. I don't let their comments make me do something harmful to myself or feel any kind of guilt. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q4: Q4: When introducing yourself to someone new, what are some ways to disclose your illness without breaching your boundaries? #LupusChat https://t.co/7DQNuHkUSq |
| #LupusChat @Lupus_Chat RT @Xtel007: A4. It depends on where I am in my journey, honestly. Like I said, when I’m a bit more removed from faring it’s easier to talk about. But in the midst of a flare, I feel too vulnerable. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A4. I have let people know that I have Lupus, or that I was really sick and used to need frequent hospitalization, which is why I’m taking things super slow now. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A4: This is a tough question. Romantically, I felt more comfortable disclosing about my health when I was more stable during periods of time when I was not in a lupus flare. At my sickest moments, I felt way too vulnerable to discuss it at length. #LupusChat |
| PrincessCarna 🦄🦄🦄 @PrincessCarna Ans3: I used to break down in tears. I’ve been on steroid therapy for 20 years...for awhile there you couldn’t tell but the affects took place overnight. I couldn’t hide the moon face and weight gain. A lot of assumptions were made about my capability to do anything. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @super_von I love your kool-aid analogy! 😄#LupusChat https://t.co/ZEyJafNMT5 |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : I advocate for myself. I don't let their comments make me do something harmful to myself or feel any kind of guilt. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: This is a tough question. Romantically, I felt more comfortable disclosing about my health when I was more stable during periods of time when I was not in a lupus flare. At my sickest moments, I felt way too vulnerable to discuss it at length. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A4. I have let people know that I have Lupus, or that I was really sick and used to need frequent hospitalization, which is why I’m taking things super slow now. #LupusChat |
| #LupusChat @Lupus_Chat RT @PrincessCarna: Ans3: Ans3: I used to break down in tears. I’ve been on steroid therapy for 20 years...for awhile there you couldn’t tell but the affects took place overnight. I couldn’t hide the moon face and weight gain. A lot of assumptions were made about my capability to do anything. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A4. Sometimes too, I focus on the specifics and need-to-know stuff. For example, at the gym, relevant people need to know that I have joint and back issues. At work, that I need to sit sometimes, etc. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A4: In a platonic setting, I prefer to focus on my patient advocacy work instead of focusing on how lupus affects me daily when I meet someone new. There’s no need to overshare unless it’s necessary for my needs. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A4. Sometimes too, I focus on the specifics and need-to-know stuff. For example, at the gym, relevant people need to know that I have joint and back issues. At work, that I need to sit sometimes, etc. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: In a platonic setting, I prefer to focus on my patient advocacy work instead of focusing on how lupus affects me daily when I meet someone new. There’s no need to overshare unless it’s necessary for my needs. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A4. Sometimes too, I focus on the specifics and need-to-know stuff. For example, at the gym, relevant people need to know that I have joint and back issues. At work, that I need to sit sometimes, etc. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @PrincessCarna: Ans3: Ans3: I used to break down in tears. I’ve been on steroid therapy for 20 years...for awhile there you couldn’t tell but the affects took place overnight. I couldn’t hide the moon face and weight gain. A lot of assumptions were made about my capability to do anything. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A4. I have let people know that I have Lupus, or that I was really sick and used to need frequent hospitalization, which is why I’m taking things super slow now. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : I advocate for myself. I don't let their comments make me do something harmful to myself or feel any kind of guilt. #LupusChat |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 A3 not gonna lie, I naturally get impatient/frustrated, but I work on reminding myself that I at one point didn’t know/wasn’t aware either, so I do what I can to guide them to awareness. Whether they take it or not is up to them, and I at least know that I did my part #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A4. It depends on where I am in my journey, honestly. Like I said, when I’m a bit more removed from faring it’s easier to talk about. But in the midst of a flare, I feel too vulnerable. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q4: Q4: When introducing yourself to someone new, what are some ways to disclose your illness without breaching your boundaries? #LupusChat https://t.co/7DQNuHkUSq |
| Friends AgainstLupus @AgainstLupus RT @Xtel007: A4. Sometimes too, I focus on the specifics and need-to-know stuff. For example, at the gym, relevant people need to know that I have joint and back issues. At work, that I need to sit sometimes, etc. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @TiffanyAndLupus: A4: A4: In a platonic setting, I prefer to focus on my patient advocacy work instead of focusing on how lupus affects me daily when I meet someone new. There’s no need to overshare unless it’s necessary for my needs. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : I advocate for myself. I don't let their comments make me do something harmful to myself or feel any kind of guilt. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @TiffanyAndLupus: A4: A4: This is a tough question. Romantically, I felt more comfortable disclosing about my health when I was more stable during periods of time when I was not in a lupus flare. At my sickest moments, I felt way too vulnerable to discuss it at length. #LupusChat |
| #LupusChat @Lupus_Chat RT @xthina_etc: A3 not gonna lie, I naturally get impatient/frustrated, but I work on reminding myself that I at one point didn’t know/wasn’t aware either, so I do what I can to guide them to awareness. Whether they take it or not is up to them, and I at least know that I did my part #LupusChat |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 A4 I’m still working on this one actually. Most of the time, my lupus comes up whenever I have to express my limits to certain activities or why I choose to eat things with less sodium👍🏼 #LupusChat |
| Adri @supacooladri A1: I usually appreciate someone asking me about my feelings. And sometimes I find myself not knowing what to say. #lupuschat |
| #LupusChat @Lupus_Chat La discriminación sanitaria, en sus múltiples formas, está entretejida en el tejido de la sociedad. Discutiremos formas de ayudar a combatir la discriminación que enfrentamos a nivel personal, en la pregunta 5. #LupusChat https://t.co/2sF3Cgf3IL |
| #LupusChat @Lupus_Chat Ableism, in its many forms, is woven into the fabric of society. We’ll discuss ways to help combat the ableism we face on a personal level, in Question 5. #LupusChat https://t.co/OpEOBwkyyV |
| #LupusChat @Lupus_Chat RT @xthina_etc: A4 I’m still working on this one actually. Most of the time, my lupus comes up whenever I have to express my limits to certain activities or why I choose to eat things with less sodium👍🏼 #LupusChat |
| #LupusChat @Lupus_Chat RT @supacooladri: A1: A1: I usually appreciate someone asking me about my feelings. And sometimes I find myself not knowing what to say. #lupuschat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Ableism, in its many forms, is woven into the fabric of society. We’ll discuss ways to help combat the ableism we face on a personal level, in Question 5. #LupusChat https://t.co/OpEOBwkyyV |
| #LupusChat @Lupus_Chat Q5: Cuáles son algunos consejos para ayudar a navegar una conversación con alguien que usa un lenguaje discriminativo hacia nosotros u otros? #LupusChat https://t.co/DEON0siFvi |
| #LupusChat @Lupus_Chat Q5: What are some tips to help navigate a conversation with someone using ableist language toward us or others? #LupusChat https://t.co/YvBNVKP0qe |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: A3 not gonna lie, I naturally get impatient/frustrated, but I work on reminding myself that I at one point didn’t know/wasn’t aware either, so I do what I can to guide them to awareness. Whether they take it or not is up to them, and I at least know that I did my part #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @supacooladri: A1: A1: I usually appreciate someone asking me about my feelings. And sometimes I find myself not knowing what to say. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Ableism, in its many forms, is woven into the fabric of society. We’ll discuss ways to help combat the ableism we face on a personal level, in Question 5. #LupusChat https://t.co/OpEOBwkyyV |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Ableism, in its many forms, is woven into the fabric of society. We’ll discuss ways to help combat the ableism we face on a personal level, in Question 5. #LupusChat https://t.co/OpEOBwkyyV |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: A4 I’m still working on this one actually. Most of the time, my lupus comes up whenever I have to express my limits to certain activities or why I choose to eat things with less sodium👍🏼 #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q5: Q5: What are some tips to help navigate a conversation with someone using ableist language toward us or others? #LupusChat https://t.co/YvBNVKP0qe |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q5: Q5: What are some tips to help navigate a conversation with someone using ableist language toward us or others? #LupusChat https://t.co/YvBNVKP0qe |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A5. I’ve always had a strong reaction to people trivializing my experience. Like that time I told my mom I couldn’t do something because I was tired and she said “well everyone gets tired”. I yelled a lot. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @supacooladri Thank you!! OMG, we totally share a Lupiversary month! At least that's what I like to call it since we're thriving after life with lupus. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A5. I’ve always had a strong reaction to people trivializing my experience. Like that time I told my mom I couldn’t do something because I was tired and she said “well everyone gets tired”. I yelled a lot. #LupusChat |
| Friends AgainstLupus @AgainstLupus RT @Xtel007: A5. I’ve always had a strong reaction to people trivializing my experience. Like that time I told my mom I couldn’t do something because I was tired and she said “well everyone gets tired”. I yelled a lot. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A5. I’m not saying you should yell lol. But let people know they can’t say certain words/expressions or have certain attitudes around you. And for your wellbeing, walk away if you have to. #LupusChat |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 A5 man, this is a good topic to talk about considering Prednisone was recently trending👏🏼 the best thing we can do is say what we know, but also accept that others will most likely stick to their ableist ways b/c they’re more comfortable that way🤷🏼♀️ #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A5. I’ve always had a strong reaction to people trivializing my experience. Like that time I told my mom I couldn’t do something because I was tired and she said “well everyone gets tired”. I yelled a lot. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A5. I’m not saying you should yell lol. But let people know they can’t say certain words/expressions or have certain attitudes around you. And for your wellbeing, walk away if you have to. #LupusChat |
| #LupusChat @Lupus_Chat RT @xthina_etc: A5 man, this is a good topic to talk about considering Prednisone was recently trending👏🏼 the best thing we can do is say what we know, but also accept that others will most likely stick to their ableist ways b/c they’re more comfortable that way🤷🏼♀️ #LupusChat |
| PrincessCarna 🦄🦄🦄 @PrincessCarna Ans4: This is something I still haven’t mastered. Sometimes I hope people don’t notice but it’s not possible. Inevitably a door does open up where I am able to share some light background. It still hurts a little everytime. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: A5 man, this is a good topic to talk about considering Prednisone was recently trending👏🏼 the best thing we can do is say what we know, but also accept that others will most likely stick to their ableist ways b/c they’re more comfortable that way🤷🏼♀️ #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A5. I’m not saying you should yell lol. But let people know they can’t say certain words/expressions or have certain attitudes around you. And for your wellbeing, walk away if you have to. #LupusChat |
| #LupusChat @Lupus_Chat Stay tuned. Our last #LupusChat question is up next! https://t.co/yn6gITvGy8 |
| #LupusChat @Lupus_Chat ¡Estén atentos para nuestra última pregunta de #LupusChat! https://t.co/aKpl3LGnQY |
| Adri @supacooladri A2: Yes, I see it from my family for the most part. I know there intention is good but it's frustrating that they think I'm not doing enough to stay healthy and feel good. I usually just say thank you and move on from the conversation. #lupuschat |
| LupieSoftballMom🥎 @av8trwife Umm...yeah. My problem was being completely open & honest about how my illness affects me & how things are prioritized in our home. The people my husband & I told said they understood, etc. But after living w/us for a while they became frustrated & admitted that they thought(1/2) |
| #LupusChat @Lupus_Chat Q6: Puedes compartir formas en que podamos sentirnos más cómodos comunicando nuestras necesidades? #LupusChat https://t.co/AcpJz7dPyq |
| #LupusChat @Lupus_Chat Q6: Can you share ways we can become more comfortable with communicating our needs? #LupusChat https://t.co/zIW3eEPbjG |
| Tiffany ⁷ @TiffanyAndLupus A5: Sometimes people are clueless to the fact that they are using ableist language. Although it's not my job to, I attempt to educate them so that they are aware & offer language they could use instead. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @supacooladri: A2: A2: Yes, I see it from my family for the most part. I know there intention is good but it's frustrating that they think I'm not doing enough to stay healthy and feel good. I usually just say thank you and move on from the conversation. #lupuschat |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Q4: Q4: When introducing yourself to someone new, what are some ways to disclose your illness without breaching your boundaries? #LupusChat https://t.co/7DQNuHkUSq |
| Tiffany ⁷ @TiffanyAndLupus A6: I think acknowledging what our needs are for ourselves is the first step. That it is okay to have specific needs and to recognize that our needs are important, necessary even to our daily life. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Q5: Q5: What are some tips to help navigate a conversation with someone using ableist language toward us or others? #LupusChat https://t.co/YvBNVKP0qe |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Q6: Q6: Can you share ways we can become more comfortable with communicating our needs? #LupusChat https://t.co/zIW3eEPbjG |
| Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Q6: Q6: Can you share ways we can become more comfortable with communicating our needs? #LupusChat https://t.co/zIW3eEPbjG |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. Step 1 I think is realizing that our needs are valid. They are not trivial or annoying, they’re just what we need to be okay. #LupusChat |
| #LupusChat @Lupus_Chat RT @PrincessCarna: Ans4: Ans4: This is something I still haven’t mastered. Sometimes I hope people don’t notice but it’s not possible. Inevitably a door does open up where I am able to share some light background. It still hurts a little everytime. #LupusChat |
| #LupusChat @Lupus_Chat RT @supacooladri: A2: A2: Yes, I see it from my family for the most part. I know there intention is good but it's frustrating that they think I'm not doing enough to stay healthy and feel good. I usually just say thank you and move on from the conversation. #lupuschat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A5: A5: Sometimes people are clueless to the fact that they are using ableist language. Although it's not my job to, I attempt to educate them so that they are aware & offer language they could use instead. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q6: Q6: Can you share ways we can become more comfortable with communicating our needs? #LupusChat https://t.co/zIW3eEPbjG |
| THINA—OGKPOPSTAN.COM @ogkpopstan98 A6 know that it’s TOTALLY OK to tell others our needs👍🏼 we were always kind of taught that expressing our needs is “selfish” but there’s a fine line between selfishness and self-care, and we as lupies HAVE to care for ourselves, and those who love us WILL understand💜 #LupusChat |
 | Rachel F F@#K LUPUS @FKLUPUS A:1 It depends on the motivation behind the question. If it's an abelist type of questioning I get annoyed. If it's genuine concern then it's appreciated. #LupusChat https://t.co/B0W5JIMbVi |
| Debra Carroll @todebra A6: Honor yourself. Be ok with your limitations and what you need at the moment, and be ok with not everyone "getting it." #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. Step 1 I think is realizing that our needs are valid. They are not trivial or annoying, they’re just what we need to be okay. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A6: A6: I think acknowledging what our needs are for ourselves is the first step. That it is okay to have specific needs and to recognize that our needs are important, necessary even to our daily life. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. Unfortunately our needs are sometimes not going to get acknowledged, but they def won’t be if we don’t voice them. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 A6. Once we voice our needs, we can then set aside the ones who can’t or won’t provide the support we need, and focus on the ones who can give us what we need. #LupusChat |
 | Rev. Dr. 4WheelWorkout @4WheelWorkOut RT @Lupus_Chat: Q4: Q4: When introducing yourself to someone new, what are some ways to disclose your illness without breaching your boundaries? #LupusChat https://t.co/7DQNuHkUSq |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A6. Once we voice our needs, we can then set aside the ones who can’t or won’t provide the support we need, and focus on the ones who can give us what we need. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A6. Unfortunately our needs are sometimes not going to get acknowledged, but they def won’t be if we don’t voice them. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @TiffanyAndLupus: A5: A5: Sometimes people are clueless to the fact that they are using ableist language. Although it's not my job to, I attempt to educate them so that they are aware & offer language they could use instead. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @todebra: A6: A6: Honor yourself. Be ok with your limitations and what you need at the moment, and be ok with not everyone "getting it." #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Xtel007: A6. Step 1 I think is realizing that our needs are valid. They are not trivial or annoying, they’re just what we need to be okay. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @FKLUPUS: A:1 It depends on the motivation behind the question. If it's an abelist type of questioning I get annoyed. If it's genuine concern then it's appreciated. #LupusChat https://t.co/B0W5JIMbVi |
| Tiffany ⁷ @TiffanyAndLupus RT @xthina_etc: A6 know that it’s TOTALLY OK to tell others our needs👍🏼 we were always kind of taught that expressing our needs is “selfish” but there’s a fine line between selfishness and self-care, and we as lupies HAVE to care for ourselves, and those who love us WILL understand💜 #LupusChat |
| #LupusChat @Lupus_Chat RT @xthina_etc: A6 know that it’s TOTALLY OK to tell others our needs👍🏼 we were always kind of taught that expressing our needs is “selfish” but there’s a fine line between selfishness and self-care, and we as lupies HAVE to care for ourselves, and those who love us WILL understand💜 #LupusChat |
| #LupusChat @Lupus_Chat RT @FKLUPUS: A:1 It depends on the motivation behind the question. If it's an abelist type of questioning I get annoyed. If it's genuine concern then it's appreciated. #LupusChat https://t.co/B0W5JIMbVi |
| #LupusChat @Lupus_Chat RT @todebra: A6: A6: Honor yourself. Be ok with your limitations and what you need at the moment, and be ok with not everyone "getting it." #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. Unfortunately our needs are sometimes not going to get acknowledged, but they def won’t be if we don’t voice them. #LupusChat |
| #LupusChat @Lupus_Chat RT @Xtel007: A6. Once we voice our needs, we can then set aside the ones who can’t or won’t provide the support we need, and focus on the ones who can give us what we need. #LupusChat |
| #LupusChat @Lupus_Chat Agradeciendo a cada uno de ustedes por unirse a nuestra discusión #LupusChat sobre formas de comunicarse sobre enfermedades crónicas. ¡Apreciamos todo lo que ha compartido hoy con la comunidad! https://t.co/cc0iPpv7A2 |
| #LupusChat @Lupus_Chat Thanking each of you for joining our #LupusChat discussion on ways to communicate about chronic illness. We appreciate all you’ve shared with the community today! https://t.co/DCvu28XDzP |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A6 : I feel as though this should be a two way street. When spaces are designed for honest communication it makes things easier. As we grow without putting pressure on ourselves we become more comfortable. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Thanking each of you for joining our #LupusChat discussion on ways to communicate about chronic illness. We appreciate all you’ve shared with the community today! https://t.co/DCvu28XDzP |
| #LupusChat @Lupus_Chat RT @raquelonpurpose: @Lupus_Chat A6 : @Lupus_Chat A6 : I feel as though this should be a two way street. When spaces are designed for honest communication it makes things easier. As we grow without putting pressure on ourselves we become more comfortable. #LupusChat |
| #LupusChat @Lupus_Chat Nuestro próximo #LupusChat será el domingo 1 de marzo de 2020. ¡Estén atentos para nuestro próximo anuncio de tema y recuerden marcar sus calendarios para guardar la fecha! https://t.co/vBbWk9NiF3 |
| #LupusChat @Lupus_Chat Our next #LupusChat will be Sunday March 1, 2020. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date! https://t.co/er8f1lQLHa |
 | FifiHappiness @FifiLa_Rue @SheWhoRises @Lupus_Chat I have a problem with people being around me during flares, or asking for physical assistance #lupuschat |
| LupieSoftballMom🥎 @av8trwife I'm Tracy, I'm from a small-ish town in Utah. My main thing is being the best Mom & wife possible each day. I'm also a musician & huge sports fan. Also trying to be a better #LupusAdvocate. Perfect end to the day is time with my fam: dinner then a movie or TV show. #LupusChat |
| Rachel F F@#K LUPUS @FKLUPUS A:2 ABSOLUTELY! I don't look sick therefore I should have the ability to do any and everything. It's "just____" I ask if they'd say the same thing to a cancer patient, if I were bald would it make them feel differently, don't you think if I could *just* I would? #LupusChat https://t.co/Coz811LYpV |
| #LupusChat @Lupus_Chat Disfrute del resto de su día & acuérdese de practicar el cuidado de sí mismo hoy porque además #LupusChat también es #SelfcareSunday! https://t.co/aoedkW5MNb |
| #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/v2LAv0hZyk |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Our next #LupusChat will be Sunday March 1, 2020. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date! https://t.co/er8f1lQLHa |
| #LupusChat @Lupus_Chat RT @FKLUPUS: A:2 ABSOLUTELY! I don't look sick therefore I should have the ability to do any and everything. It's "just____" I ask if they'd say the same thing to a cancer patient, if I were bald would it make them feel differently, don't you think if I could *just* I would? #LupusChat https://t.co/Coz811LYpV |
| #LupusChat @Lupus_Chat RT @av8trwife: I'm Tracy, I'm from a small-ish town in Utah. My main thing is being the best Mom & wife possible each day. I'm also a musician & huge sports fan. Also trying to be a better #LupusAdvocate. Perfect end to the day is time with my fam: dinner then a movie or TV show. #LupusChat |
| Kate Sattler | Sweet Freeze @katesattler @TiffanyAndLupus Wow, yes! And so much easier said than done. It seems ongoing and involves so much unlearning. #LupusChat |
| #LupusChat @Lupus_Chat RT @FifiLa_Rue: @SheWhoRises @Lupus_Chat I have a problem with people being around me during flares, or asking for physical assistance #lupuschat |
| #LupusChat @Lupus_Chat RT @katesattler: @TiffanyAndLupus Wow, yes! And so much easier said than done. It seems ongoing and involves so much unlearning. #LupusChat |
| #LupusChat @Lupus_Chat RT @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/v2LAv0hZyk |
| RaquelRoschell @raquelonpurpose RT @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/v2LAv0hZyk |
| #LupusChat @Lupus_Chat If anyone can relate to what Laura is going through, please send her a tweet using the #LupusChat hashtag ⬇️ |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: If anyone can relate to what Laura is going through, please send her a tweet using the #LupusChat hashtag ⬇️ |
| Caring For Lupus @CaringForLupus RT @FKLUPUS: A:2 ABSOLUTELY! I don't look sick therefore I should have the ability to do any and everything. It's "just____" I ask if they'd say the same thing to a cancer patient, if I were bald would it make them feel differently, don't you think if I could *just* I would? #LupusChat https://t.co/Coz811LYpV |
| Caring For Lupus @CaringForLupus RT @av8trwife: I'm Tracy, I'm from a small-ish town in Utah. My main thing is being the best Mom & wife possible each day. I'm also a musician & huge sports fan. Also trying to be a better #LupusAdvocate. Perfect end to the day is time with my fam: dinner then a movie or TV show. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Thanking each of you for joining our #LupusChat discussion on ways to communicate about chronic illness. We appreciate all you’ve shared with the community today! https://t.co/DCvu28XDzP |
| Caring For Lupus @CaringForLupus RT @raquelonpurpose: @Lupus_Chat A6 : @Lupus_Chat A6 : I feel as though this should be a two way street. When spaces are designed for honest communication it makes things easier. As we grow without putting pressure on ourselves we become more comfortable. #LupusChat |
 | 🌙🌻 @_lunakay RT @TiffanyAndLupus: A1: A1: When people ask me about lupus, I feel thankful and appreciative that they want to know more about how lupus affects me and my daily life. I try to use it as an educational moment so they can be more understanding. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A6. Once we voice our needs, we can then set aside the ones who can’t or won’t provide the support we need, and focus on the ones who can give us what we need. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A6. Unfortunately our needs are sometimes not going to get acknowledged, but they def won’t be if we don’t voice them. #LupusChat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: If anyone can relate to what Laura is going through, please send her a tweet using the #LupusChat hashtag ⬇️ |
| Caring For Lupus @CaringForLupus RT @todebra: A6: A6: Honor yourself. Be ok with your limitations and what you need at the moment, and be ok with not everyone "getting it." #LupusChat |
| Caring For Lupus @CaringForLupus RT @FKLUPUS: A:1 It depends on the motivation behind the question. If it's an abelist type of questioning I get annoyed. If it's genuine concern then it's appreciated. #LupusChat https://t.co/B0W5JIMbVi |
| Caring For Lupus @CaringForLupus RT @xthina_etc: A6 know that it’s TOTALLY OK to tell others our needs👍🏼 we were always kind of taught that expressing our needs is “selfish” but there’s a fine line between selfishness and self-care, and we as lupies HAVE to care for ourselves, and those who love us WILL understand💜 #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A6. Step 1 I think is realizing that our needs are valid. They are not trivial or annoying, they’re just what we need to be okay. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A6: A6: I think acknowledging what our needs are for ourselves is the first step. That it is okay to have specific needs and to recognize that our needs are important, necessary even to our daily life. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A5: A5: Sometimes people are clueless to the fact that they are using ableist language. Although it's not my job to, I attempt to educate them so that they are aware & offer language they could use instead. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q6: Q6: Puedes compartir formas en que podamos sentirnos más cómodos comunicando nuestras necesidades? #LupusChat https://t.co/AcpJz7dPyq |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q6: Q6: Can you share ways we can become more comfortable with communicating our needs? #LupusChat https://t.co/zIW3eEPbjG |
| Caring For Lupus @CaringForLupus RT @supacooladri: A2: A2: Yes, I see it from my family for the most part. I know there intention is good but it's frustrating that they think I'm not doing enough to stay healthy and feel good. I usually just say thank you and move on from the conversation. #lupuschat |
| Caring For Lupus @CaringForLupus RT @PrincessCarna: Ans4: Ans4: This is something I still haven’t mastered. Sometimes I hope people don’t notice but it’s not possible. Inevitably a door does open up where I am able to share some light background. It still hurts a little everytime. #LupusChat |
| Caring For Lupus @CaringForLupus RT @xthina_etc: A5 man, this is a good topic to talk about considering Prednisone was recently trending👏🏼 the best thing we can do is say what we know, but also accept that others will most likely stick to their ableist ways b/c they’re more comfortable that way🤷🏼♀️ #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A5. I’m not saying you should yell lol. But let people know they can’t say certain words/expressions or have certain attitudes around you. And for your wellbeing, walk away if you have to. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A5. I’ve always had a strong reaction to people trivializing my experience. Like that time I told my mom I couldn’t do something because I was tired and she said “well everyone gets tired”. I yelled a lot. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q5: Q5: What are some tips to help navigate a conversation with someone using ableist language toward us or others? #LupusChat https://t.co/YvBNVKP0qe |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q5: Q5: Cuáles son algunos consejos para ayudar a navegar una conversación con alguien que usa un lenguaje discriminativo hacia nosotros u otros? #LupusChat https://t.co/DEON0siFvi |
| Caring For Lupus @CaringForLupus RT @supacooladri: A1: A1: I usually appreciate someone asking me about my feelings. And sometimes I find myself not knowing what to say. #lupuschat |
| Caring For Lupus @CaringForLupus RT @xthina_etc: A4 I’m still working on this one actually. Most of the time, my lupus comes up whenever I have to express my limits to certain activities or why I choose to eat things with less sodium👍🏼 #LupusChat |
| Caring For Lupus @CaringForLupus RT @xthina_etc: A3 not gonna lie, I naturally get impatient/frustrated, but I work on reminding myself that I at one point didn’t know/wasn’t aware either, so I do what I can to guide them to awareness. Whether they take it or not is up to them, and I at least know that I did my part #LupusChat |
| Rachel F F@#K LUPUS @FKLUPUS A:3 It depends (again) on motivation. If it's concern I may or may not share details. If it's snark (I saw you doing xyz, why can't you...) then it's met with the same energy 😂 Either way I owe only myself so I don't like explaining myself. No is a complete sentence. #LupusChat https://t.co/EFRASuEn5f |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A4: A4: In a platonic setting, I prefer to focus on my patient advocacy work instead of focusing on how lupus affects me daily when I meet someone new. There’s no need to overshare unless it’s necessary for my needs. #LupusChat |
| Caring For Lupus @CaringForLupus RT @PrincessCarna: Ans3: Ans3: I used to break down in tears. I’ve been on steroid therapy for 20 years...for awhile there you couldn’t tell but the affects took place overnight. I couldn’t hide the moon face and weight gain. A lot of assumptions were made about my capability to do anything. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A4. I have let people know that I have Lupus, or that I was really sick and used to need frequent hospitalization, which is why I’m taking things super slow now. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A4: A4: This is a tough question. Romantically, I felt more comfortable disclosing about my health when I was more stable during periods of time when I was not in a lupus flare. At my sickest moments, I felt way too vulnerable to discuss it at length. #LupusChat |
| Caring For Lupus @CaringForLupus RT @raquelonpurpose: @Lupus_Chat A3 : @Lupus_Chat A3 : I advocate for myself. I don't let their comments make me do something harmful to myself or feel any kind of guilt. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A4. It depends on where I am in my journey, honestly. Like I said, when I’m a bit more removed from faring it’s easier to talk about. But in the midst of a flare, I feel too vulnerable. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q4: Q4: Cuando conoces a alguien nuevo, cuáles son algunas formas de revelar tu enfermedad sin romper tus límites? #LupusChat https://t.co/IqHT22kCww |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q4: Q4: When introducing yourself to someone new, what are some ways to disclose your illness without breaching your boundaries? #LupusChat https://t.co/7DQNuHkUSq |
| LupieSoftballMom🥎 @av8trwife RT @PrincessCarna: Ans 2: Ans 2: Some think all chronic illness is exactly alike. I find myself repeating everyone has a story and everyone’s path is different. I still work..people often relay to me it can’t be that bad. I’ve had to reform from being an extremely private person to stop this.#LupusChat |
| Caring For Lupus @CaringForLupus RT @av8trwife: Honestly, frustrated. The longer I live with #lupus I find I often don't have the right words to accurately describe or express how it affects me, my family & my life. Too much us still unknown or misunderstood and it's difficult to get past those issues. #LupusChat |
| Caring For Lupus @CaringForLupus RT @TiffanyAndLupus: A3: A3: Frustration is my first reaction when someone unknowingly imposes on the limits my health requires. It’s not easy to stand up for yourself in situations where someone isn’t knowledgable about my health condition. #Lupuschat |
| Caring For Lupus @CaringForLupus RT @Xtel007: A3. I know it might be easier for people to understand if they understand what’s going on with me. Some people will never understand though, so for the most part I’m careful with the amount of energy I use trying. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q3: Q3: What is your general reaction when someone you haven’t disclosed your illness to makes comments imposing upon the limits you’ve set for yourself? #LupusChat https://t.co/IFPDKDwmjX |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q3: Q3: Cuál es su reacción general cuando alguien a quien no ha revelado su enfermedad hace comentarios que van encontra de los límites que usted ha establecido? #LupusChat https://t.co/dENfZ3G4NR |
 | all the good things. @wandarigby #lupuschat I’m here. 9pm in Europe. Too tired to form intelligent sentences but here, scrolling & learning. Love 💜 https://t.co/nItRNqK7qm |
| 🌙🌻 @_lunakay RT @TiffanyAndLupus: A3: A3: Frustration is my first reaction when someone unknowingly imposes on the limits my health requires. It’s not easy to stand up for yourself in situations where someone isn’t knowledgable about my health condition. #Lupuschat |
| Rachel F F@#K LUPUS @FKLUPUS A:4 Depends If it's an acquaintance then you are on a need to know basis about my life; you don't need to know. If you're staying or it's medically necessary, then I don't mind vomiting all the diagnosis I have on you. 🤣 #Lupuschat https://t.co/lp7xPB2C2T |
| Tiffany ⁷ @TiffanyAndLupus RT @katesattler: @TiffanyAndLupus Wow, yes! And so much easier said than done. It seems ongoing and involves so much unlearning. #LupusChat |
 | RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Q1: Q1: Cómo te sientes cuando otros te preguntan sobre la vida con Lupus? #LupusChat https://t.co/D8L2ey3kOq |
| 🌙🌻 @_lunakay RT @supacooladri: A2: A2: Yes, I see it from my family for the most part. I know there intention is good but it's frustrating that they think I'm not doing enough to stay healthy and feel good. I usually just say thank you and move on from the conversation. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @wandarigby: #lupuschat I’m here. 9pm in Europe. Too tired to form intelligent sentences but here, scrolling & learning. Love 💜 https://t.co/nItRNqK7qm |
| Rachel F F@#K LUPUS @FKLUPUS A:5 Well, if you looked at my answers up to this point, you know I can be snarky. I meet abelist with the same energy they give me because compassion isn't rocket science. You can stay in your lane and have questions w/o being abelist. It's not hard. #LupusChat https://t.co/I3XFoPZYLO |
| Tiffany ⁷ @TiffanyAndLupus RT @FKLUPUS: A:3 It depends (again) on motivation. If it's concern I may or may not share details. If it's snark (I saw you doing xyz, why can't you...) then it's met with the same energy 😂 Either way I owe only myself so I don't like explaining myself. No is a complete sentence. #LupusChat https://t.co/EFRASuEn5f |
| Tiffany ⁷ @TiffanyAndLupus RT @av8trwife: I'm Tracy, I'm from a small-ish town in Utah. My main thing is being the best Mom & wife possible each day. I'm also a musician & huge sports fan. Also trying to be a better #LupusAdvocate. Perfect end to the day is time with my fam: dinner then a movie or TV show. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @FifiLa_Rue: @SheWhoRises @Lupus_Chat I have a problem with people being around me during flares, or asking for physical assistance #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @raquelonpurpose: @Lupus_Chat A6 : @Lupus_Chat A6 : I feel as though this should be a two way street. When spaces are designed for honest communication it makes things easier. As we grow without putting pressure on ourselves we become more comfortable. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @TiffanyAndLupus: A6: A6: I think acknowledging what our needs are for ourselves is the first step. That it is okay to have specific needs and to recognize that our needs are important, necessary even to our daily life. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @CaringForLupus: Hi.....I'm Elizabeth from NJ and a #LupusChat co-host. My twelve year old daughter is a Lupus Warrior. My husband says that his perfect way to end the day is when he gets home and spends time with our little ones https://t.co/XuBcG8cxyH |
| Tiffany ⁷ @TiffanyAndLupus @wandarigby 💜💜💜 & that too is okay. #LupusChat |
| RarasNoInvisibles @NoInvisibles RT @Lupus_Chat: Parece que pasamos por una miríada de sentimientos cuando nos preguntan sobre nuestras enfermedades crónicas. Continuemos explorando la forma en que navegamos nuestras interacciones con otros en la Pregunta 2. #LupusChat https://t.co/mtnvoWUCrK |
| LupieSoftballMom🥎 @av8trwife I just calmly explain I have an autoimmune disease, #Lupus, which often severely hinders where I can go & when, & what I am able to do. If they ask more questions, I'll answer, but I don't usually add more if they don't. Trying to be better! #LupusChat |
| Rachel F F@#K LUPUS @FKLUPUS A:6 I've suffered major consequences only I have to live with by not communicating my needs FIRMLY. If you put things into context that way (it's your life that ONLY YOU have to live) I think it's easier to communicate. Write it down, email, whatever you need to do #LupusChat https://t.co/HC7KcMvM0G |
| Tiffany ⁷ @TiffanyAndLupus RT @av8trwife: I just calmly explain I have an autoimmune disease, #Lupus, which often severely hinders where I can go & when, & what I am able to do. If they ask more questions, I'll answer, but I don't usually add more if they don't. Trying to be better! #LupusChat |
#LupusChat content from Twitter.