LupusChat Executive Board members Christele Felix, Tiffany Marie Peterson, Elizabeth SantaCruz and Carly Harrison.
Happy Lupus Awareness Month!
I had the pleasure of interviewing the LupusChat Executive Board. LupusChat is a global health organization based in New York City, founded in 2012 by Tiffany Marie Peterson. The mission of LupusChat is to "improve the quality of life for all those impacted by lupus, chronic, autoimmune, and rheumatic diseases." LupusChat hosts online Twitter chats bi-weekly on Sundays at 3:00 pm ET with discussions about health concerns and the significance they have on the lives of those living with Lupus.
Tiffany, you were recently featured in Women's Health magazine to discuss your experience with lupus outreach. Could you please share a recap with our readers?
Women’s Health Magazine was doing a series on individuals who used social media and digital tools to seek solutions and find community and reached out to me to share my story.
I shared some of the symptoms I was experiencing as a teen like joint pain in my wrists, knees, and elbows but it wasn’t until I was 24 -- about 6-7 years later that I was diagnosed with lupus. By then my symptoms had become so severe I couldn’t walk for about two months. After receiving my lupus diagnosis I became frustrated, angry even at the fact that my physician at the time hadn’t given me resources or even hope as to what my life would be like with a disease that has no cure. I turned to social media searching for others who had lupus just like me. I’m ever so grateful to the patients who were sharing their health information online because through them I found community support and answers to my burning questions.
I also shared the origin story of why I founded LupusChat in 2012, a global community organization that is patient and caregiver led and aims to build meaningful relationships between the lupus community and healthcare professionals through online discussions hosted on Twitter bi-weekly on Sundays at 3 PM eastern time. I’m very proud of the advocacy work being done through LupusChat. This year marks our 9th anniversary of striving to improve the quality of life for all those impacted by lupus, chronic, autoimmune, and rheumatic diseases. -Tiffany
What are the topics you have featured on #LupusChat this May during Lupus Awareness Month?
This May we hosted a #LupusChat discussion every single Sunday in May as is our annual custom for Lupus Awareness Month. Our featured topics revolved around specific hashtag themes. The first one, “More Research, More Treatment” was focused on the importance of lupus research and guest featured your very own, Dr. Jillian Richmond. The second, “Honoring the People Who Support Us” was focused on showing appreciation for those who assist patients on their journey with chronic illness. The third, “Patient Perspectives” focused on highlighting and uplifting the shared experiences of those living with lupus. The fourth, “Highlighting Health Disparities” was a discussion focused on analyzing health disparities and barriers to access to care with Dr. Ashira Blazer as a featured guest. The fifth and final discussion, “Life Lessons” focused on illuminating the lessons learned and the ways chronic illness changed how we navigate life. -LupusChat Board
What has been each of your favorite #LupusChat topics so far and why?
That’s a really tough question! If I had to pick one favorite #LupusChat topic from this year so far, it would be a discussion we had in collaboration with #DisablednDatinChat in February. We had a candid conversation on sex, dating, and relationships through the lens of accessibility. It was exciting to finally have an open and honest talk about romance while living with chronic illness. -Tiffany
My favorite #LupusChat topics are the ones that tend to have to do with empowerment, managing issues that come with Living with Lupus such as confidence, state of mind, setting boundaries, and being comfortable in who we are. I consider these “soft skills” when it comes to managing Lupus, which are not talked about as much as taking meds and keeping appointments (not to say that these aren’t important). -Christele
If we are speaking about this year specifically, I’d have to say my favorite #LupusChat so far has been the 2021 #AdvocateForLupus topic for Lupus Awareness Month featuring Dr. Ashira Blazer (Rheumatologist, NYU Langone). We highlighted Health Disparities and that had been something I’ve been advocating about really heavily the last few years. It’s important to me that we name the issues surrounding and embedded in healthcare and work together to remedy the problems and establish equity for all. -Carly
You have done an excellent job connecting with patients, scientists, and physicians in the lupus realm. Could you please share some advice based on your experience in community building with our readers looking to get involved in the lupus community?
The patient community wants to hear from you! Be your authentic self. Try not to take things personal when listening to patients shared experiences. Respect the voices and experience of patients and remember that kindness is key. Don’t be afraid to reach out to lupus patient advocates that are already doing advocacy work. It’s a great for way for you to contribute your knowledge and expertise and help dispel misinformation both on and offline. -Tiffany
Everyone is welcome. We love interacting with physicians and scientists, there is so much we can learn from each other. Get ready to learn a lot, to listen, and to share. -Christele
Do you have any advice for people interested in lupus advocacy?
Meet the community where they are. Seek out local organizers or advocates in the area if you can, to see what they’re already doing. You can join them or start your own initiative to fill another void. If you’re unable to do something locally, reach out to other advocates in the online space. It’s important to make connections and relationships in every sector of healthcare. Also, and most importantly, don’t feel obligated to advocate in a specific way. Do what works for you. Your voice is important no matter what lane you choose. -Carly
Advocacy can start pretty simply, by just teaching others around you about Lupus and what the experience is like, and by speaking up to ensure that yourself (and others with Lupus) are being treated well. There is a lot of power in sharing your story, and advocacy comes in so many forms. In sharing your particular experience or needs with your doctor or your neighbor or your elected official, you advocate for the next person with Lupus as well. -Christele
For our readers would like to join the discussion, please follow @Lupus_Chat or use the hashtag #LupusChat on Twitter, or check out their website at https://www.lupuschat.org/
