Kirsten Williams was diagnosed with lupus in June 2016 after a misdiagnosis that led to a stay in a mental health hospital compelled her family to take her to a RUSH hospital in Chicago.
“Lupus has changed my life,” she said. “Every year, it’s something new. Either that’s a new diagnosis, or a new symptom. Every year, it’s different.”
May is Lupus Awareness Month with May 10 singled out as World Lupus Day. During this month, “lupus warriors” and advocacy groups work to raise awareness and educate the public about this autoimmune disease, said LaShon Gurrola, an Oak Park resident who was diagnosed with lupus in 2011.
“Anytime you have a disease or illness that there is no cure, and people still do not know what it is, then that’s a problem,” Gurrola said. “When you have people who know what it is, then you can draw them as supporters.”
Lupus is a chronic autoimmune disease that can cause inflammation and pain throughout the body. It is often difficult to diagnosis because symptoms tend to mimic other disorders. Misdiagnosis is common — both Gurrola and Kirsten Williams were misdiagnosed before understanding they had lupus.
Anyone can develop lupus, but 90% are women between ages 15 and 44 and it is two to three times more likely in women of color, according to the Centers for Disease Control and Prevention.
“Often times you’re not believed with your symptoms,” Gurrola said. “At first they might think it’s more of a psychological problem … Half the battle is convincing [medical professionals] that your symptoms are true to what you’re saying.”
Kirsten Williams, for instance, was misdiagnosed with schizophrenia prior to her lupus diagnosis. At RUSH, doctors discovered through blood work that she had CNS lupus, which attacks the central nervous system. She also has SLE, or systemic lupus erythematosus, the most common type, and lupus nephritis, which affects the kidneys. She deals with chronic migraines, joint pain and fractures. She’s had a stroke and has had to go on dialysis.
“I just persevere through it,” she said. “I can’t just sit around and mope around. I have to keep busy.”
After she was well enough, Kirsten Williams decided to attend Northeastern Illinois University, which became her outlet to cope with lupus and the pain she faces. She graduated in May 2024 with a master’s degree in social work, and wants to work with people who have disabilities or are experiencing homelessness, she said.
Kirsten Williams experienced homelessness herself because of a lack of a support system and stable housing. But a social worker at RUSH helped her find housing and get set up with a housing voucher.
Although May is a good time to network with other lupus survivors and share stories, as well as advocating for what the lupus community needs, including funding and medical research, it’s not the only time to do so. They try to advocate year-round, Kirsten Williams said. Gurrola, for example, runs a support group with about 40 members who meet once a month, including Kirsten Williams.
In raising awareness, Kirsten Williams said one of her biggest goals is to advocate for those with lupus who struggle to secure housing and stable finances. Individuals with lupus are often not able to work, she said, and need resources.
“I’m so grateful to have completed my degree in social work, where I can add to advocating for these things, for people with chronic conditions,” she said.
In September of each year, there’s a walk for lupus hosted by the Lupus Society of Illinois in Chicago. In August, it’ll be in the western suburbs. Gurrola, a nurse practitioner and lupus liaison at RUSH University Medical Center, said she leads the RUSH team and her friends and family participate, too. The Lupus Foundation of America also hosts a walk in September.
Gamma Pi Rho Lupus Sorority, Inc., a non-collegiate sorority for adult women who have lupus, typically hosts a virtual walk to raise awareness for lupus in May, too, Gurrola said.
On May 3, Gurrola helped organize a Lupus Awareness Jazz Concert at First Baptist Church of Oak Park. Dion Langley, a man who was diagnosed with lupus in 2010, played the drums at the event.
“It was amazing,” she said. “People loved it and they’re asking for it annual.”
About 66 individuals attended the event, Gurrola said, including friends and coworkers. During the concert, Gurrola and Langley spoke about their experiences with lupus with a professional from LSI fielding questions.
On May 1, Gurrola served on a panel for University of Chicago Medicine and Comer Children’s Hospital along with LaVita Williams, another woman who has lupus, and others. She and Kirsten Williams are not related. The panel was geared toward kids with lupus, Gurrola said, and their parents.
“[The panel gave] parents an idea of how their child will age with lupus and how lupus doesn’t win,” she said.
Gurrola also spoke on May 4 in Milwaukee at the “Lupus Has No Face” event about lupus advocacy and selfcare. One way she practices selfcare is with music therapy, which she said is calming and can help take one’s mind off perception of pain levels.
LaVita Williams, like Gurrola, now hosts a support group in Zion. She was diagnosed with lupus in 2009 and previously attended Gurrola’s support group. She started her own so people living on the north side of Chicago would not have as far to travel for support.
“You can be more than just your diagnosis,” LaVita Williams said. “Sometimes you need somewhere to talk or to let out your frustration or to talk to people who understand what you’re going through.”
Lupus Awareness Month is a good time to help people understand what lupus is, LaVita Williams said. She and her friends and family often share social media posts and wear purple, the color associated with lupus awareness, during May.
“There’s no cure [for lupus],” she said. “We want to have people donate to any type of lupus research, donate to any foundations that help raise money to fund research to find a cure.”
From May 19 to May 22, LaVita Williams is attending a summit for lupus in Washinton, D.C., organized by the Lupus Foundation of America. During the summit, she’ll talk with state representatives about her story with lupus and about funding for lupus research. She’ll also attend a panel made up of healthcare professionals discussing new treatments and discoveries in the field.
“Yes, lupus is ugly,” Kirsten Williams said. “But when you’re focused and you have the right support, you can get through it.”
