LaShon Gurrola, an Oak Park resident since 1995, nurse practitioner and lupus liaison at Rush University Medical Center, has been living with lupus since her diagnosis in 2011. Her desire to provide educational and emotional support for others with lupus inspired her to start a support group.
Lupus, an autoimmune disease that can cause inflammation and pain throughout the body, can be hard to diagnosis as its symptoms vary considerably and overlap with many other disorders. Gurrola was misdiagnosed with bronchitis by two different doctors before discovering she had lupus that was attacking her airways.
“Looking back at it, from the time of my diagnosis, I can clearly see 10 years prior where I had signs and symptoms, but I ignored them, thinking ‘Oh, I’m just doing too much’” she said.
In 2010, Gurrola lost her husband, and the stress of grieving his death likely triggered her lupus, she said.
“Roughly six months later I got really sick,” she said. “I was having a lot of pain. It felt like it [my body] was shutting down.”
Gurrola attempted to manage at home, using her nursing education, while experiencing bloating, weight gain, fevers, hair loss and skin rashes. One day, she could barely walk so she went to the hospital and was diagnosed with systemic lupus erythematosus, the most common type of lupus.
For the first few years, Gurrola taught herself more about lupus and came to accept her diagnosis. Then she sought out a support group, discovering that none existed in the area.
After attending an educational event regarding lupus in October 2017, Gurrola reached out to a doctor from the Rush Lupus Clinic, Meenakshi Jolly, for help starting a support group. Gurrola then reached out to the Lupus Society of Illinois and trained to be a support group facilitator.
The group members are mostly referred through word of mouth or from LSI, Gurrola said. About 40 people are part of the group, she said, a significant increase from the start. The group meets once a month in a hybrid format and rotates topics related to lupus education and advocacy support, she said, and occasionally has guest speakers.
“The back end of the group session is an emotional support to each other,” Gurrola said. “It’s part educational and part emotional support.”
Gurrola said she’s faced challenges in both her career and personal life while living with lupus. As a nurse, her compromised immune system means she must be especially careful working with patients, and she requires accommodations at her job. It’s also a challenge to maintain friendships, she said, because sometimes she needs to isolate or avoid certain activities.
“We often look better than we feel,” she said. “I call it an invisible disability.”
There’s no cure for lupus. It’s a chronic, lifelong illness. Some common misconceptions are that those with lupus are lazy or just looking for drugs, Gurrola said, and are often sent home when seeking medical help.
“I just want people to know that we are more than the disease, we are more than the pain, we are more than the fatigue, we are more than the flares,” Gurrola said.
LaVita Williams, a woman with lupus in Gurrola’s support group, was diagnosed in 2009. But she said she experienced symptoms for more than a decade prior and was misdiagnosed with fibromyalgia in 1998.
“I would always get really, really sick,” Williams said. “I would have a lot of pain. I would get rashes. I couldn’t go to work.”
Williams said she enjoys helping people and organizing events. With lupus, she doesn’t have the energy she used to.
“Now that I have lupus and since I’ve been sick, people tend to think you’re lazy because of the fatigue” she said. “People with lupus are not lazy.”
In 2017, Williams said Gurrola told her about the support group. Williams joined, saying the support group helps her learn how to advocate for herself and learn more about lupus.
Williams and Gurrola are two of eight founders of Gamma Pi Rho Lupus Sorority, Inc., a non-collegiate sorority for women over the age of 18 who have lupus. The sorority organizes educational events and fundraises for LSI and the Lupus Foundation of America.
“We keep each other motivated,” she said. “We’re not letting lupus keep us down.”
Although anyone can develop lupus, 90% are women between ages 15 and 44 and it is two to three times more likely to occur in women of color, according to the Centers for Disease Control and Prevention. Dion Langley, a man diagnosed with lupus in 2010 after two years of misdiagnosis, said men with the disease can be scared to talk about it.
“I’m dealing with something that has no cure,” he said. “I’m dealing with something that men really don’t talk about.”
Langley and Gurrola met through a mutual friendship, Langley said, and occasionally collaborate on lupus events. He said he does his best to attend events Gurrola’s support group organizes. One event they worked on together, he said, combined live music with educational awareness.
“We want to help people,” he said. “Me and her work well together because we love to give, we love to give back.”
It took a long time for him to become comfortable with his diagnosis and speak out about lupus, Langley said, but he wants to use his platform as an independent drummer who tours with different bands to spread positivity.
“Lupus is not a death sentence,” he said. “But lupus is not just a physical battle, it’s a mental battle as well.”