Mary Wells is a single mother, Madison southside native, former State of Wisconsin employee, and lives with an invisible, yet ever-present lupus diagnosis. She affectionately calls herself a “Lupus Warrior”. A title she also shares with local members of the Lupus Support Group for Women of Color she founded in 2014 with Stephanie Brown. Lupus is a long-term, chronic, auto-immune disease that has no cure. Lupus shows up differently for every warrior and attacks healthy cells in different parts of the body. Lupus can cause fatigue, inflammation, pain, and a plethora of other uncomfortable symptoms. With no none cure yet, warriors can manage the disease through medicines, lifestyle changes, and supportive networks.
Wells was diagnosed in 1997. After living and working full-time with her condition for over 15 years, she decided to retire in 2014. If not for the need to provide for her family, Wells says she would have retired earlier.
She describes her own experience with lupus as an uphill battle. Upon her diagnosis, she recalls not knowing anything about systemic lupus erythematosus or lupus for short. Not many conversations were being had outside the clinic and with no prior knowledge about the disease or anyone else that was struggling with it, Wells searched near and far for a community to lean on. In these other support groups and networks, she knew exactly what was missing. An awareness. A call-out. An identification of the unique ways lupus was affecting women of color past the clinic. Wells needed a space with people who could identify with her hair and skin struggles related to her lupus journey. Also, the ways institutional racism played a role in her navigation of healthcare systems. These elements affected Wells’ everyday life, and she yearned for a space that welcomed and validated each one appropriately.
In a casual conversation with Lisa Peyton, Founding CEO & President of The Foundation for Black Women’s Wellness, Wells was encouraged by Ms. Peyton to start her own group. Without any experience in facilitation or leadership of this kind, Wells wasn’t sure if she had what it took. After realizing it was all about simply talking and connecting with others, Wells was ready to begin a new phase of her lupus journey.
Support groups are vital for the lupus community. According to a Center for Disease Control and Prevention 2024 report, People with Lupus, 90% of lupus warriors are women and women of color are two to three times more likely to develop the disease. With women like Wells, making up the majority of those living with this disease, she knew exactly the type of space that was so desperately needed.
The support group has been embedded in the community since its inception 12 years ago. Their first meeting was in the first-floor conference room at the Urban League of Greater Madison, and now the group is supported by the Foundation for Black Women’s Wellness. The group now meets virtually post-COVID 19 and considering lupus warriors are immuno-compromised. Wells explained, this is the safest option for support group members, but they occasionally are able to get together for special activities, like the Saturday Farmers Market or a play at the Overture Center.
Wells looks forward to celebrating Lupus Awareness Month all May long and continuing to bring together lupus warriors from around the world. Her local support group has been able to connect with others in several other states, Canada, and Nigeria. She no longer feels alone in her walk with lupus. Due to the nature of lupus, symptoms can be well concealed from others. This can make an already difficult experience even more isolating. She never imagined that her diagnosis, now nearly 30 years ago, would lead her to where she is now. Faithfully leading a “trusted sisterhood” where she instills in each member that they are not alone. Still, she has good and bad days, but she considers herself in remission.
The Lupus Support Group for Women of Color is hosting their first Hybrid Celebration Saturday May 30th at 2PM here in Madison. The event is community-centered bringing together lupus warriors, families, caregivers, advocates, and supporters from across the world. Additionally, the event will feature testimonies, nutrition education, gentle wellness experiences, community honors, and a memorial tribute to honor lupus warriors who have passed on.
For more information about the event visit: https://airtable.com/app7frVS5D85FXsJW/shrSMOKbJwAZ5r2Ey and for more general information about Mary Wells lupus support group, visit: https://www.ffbww.org/lupuswarriors .
