A6: All the ladies responsible for #LupusChat 👏🏾

A6: Shoutout to three incredible women who go above and beyond for our #LupusChat community! Your dedication strengthens our mission and brings hope to so many. You are truly appreciated! 💜 @caringforlupus.bsky.social @syncenerdcarly.bsky.social @xtel007.bsky.social

A5: Listening to understand is so important. No one needs to constantly be told what they should do and how they should do it or hear what someone else thinks they would do. Give me people space to process how they process, be there to listen and answer questions when asked. #LupusChat

Q5: How can we, as a lupus community, better uplift and support one another—and what advice would you give to someone who wants to support a loved one but isn’t sure how? #LupusChat

A:4 I think the perfect support system can vary person to person. That's a very personal thing. Some people want and need a large circle while others like a smaller circle. I'm one who just needs someone who is truly my person(and mostly fur babies🤭); a team of physicians WHO LISTEN; and #lupuschat

A5: I think it’s important for us to hold space and create safe spaces for each other to have honest conversations without judgment where we can share our experiences living with chronic illness. #LupusChat

A:2 I have had an awful time finding community because I come from an extremely hypocritical religious family who believes in praying everything away (excuse not to deal with reality imo). If I don't talk about #lupus we're great but if I do I have to hear a sermon. 🤦🏿‍♀️ #LupusChat

A3: Close friends were there during those early diagnosis days and my family. As I did research online I found communities including this one. #LupusChat

A2: I'm grateful that I haven't had trouble finding supportive people and circles. Me willing to be vulnerable and transparent has always been the issue in my life. I've come along way. #LupusChat

Hi, I'm Raquel from Texas. Living with a few diagnoses. All I can think is Pjs and Lounge Day😀. Celebration is self-explanatory. #LupusChat

Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and if you could create a new holiday, what would it be called, and how would people celebrate it?

ID: a kid dancing with a crown on his head. the word celebrate is below him.

Here, you’re encouraged to speak openly about your journey—the struggles, the victories, and the support (or lack of it) along the way. By sharing our stories, we can help shape a more compassionate and understanding community for everyone living with lupus. #LupusChat

To add our feed to your skyline tap the magnifying glass. In the search bar, type #LupusChat and click on “Feeds.” Next, tap on the #LupusChat feed you found in the search. Click the Follow icon button. Finally, tap the pin icon next to the #LupusChat feed to pin it to your timeline.

A2: I have to ensure that new providers understand the dynamic of how my care is managed and know their place on the team. They must work well with others and also understand that I run point and we don’t move/treat without MY green light. I have to review all data and facts first. #LupusChat