At age 6, Kirsten Schultz was experiencing intense fatigue, fever, rashes, pain and joint swelling. After a few months of trying to diagnose her, doctors delivered a disturbing diagnosis: leukemia, untreatable and likely fatal.
Schultz’s single mother didn’t believe it. Her daughter’s symptoms didn’t fit. The internet was in its infancy in 1993, so she began spending hours in the medical library at University of Oregon in Eugene researching possible causes for her daughter’s symptoms. She also thoroughly tracked the ebb and flow of her symptoms, including taking video of her rashes as they developed.
“We went back to the doctors with this huge pile of evidence and my mom told them she thought I had systemic JIA [once called Still’s disease],” says Schultz, now 28 and living in Madison, Wisconsin. “They just sort of accepted it, and then suggested I start on methotrexate. Because of the whole experience, especially the mistaken cancer diagnosis and the fact that methotrexate is also used for cancer, my mom understandably melted down.”
Growing Up Without Health Care
The “methotrexate conversation,” says Schultz, seemed to change her mother, who already struggled with mental health issues, permanently. “She decided she was a better ‘doctor’ than the doctors because she’d found the diagnosis,” Shultz explains. “From the time I was seven until I was twenty-one I didn’t see another doctor.”
Treated only with over-the-counter non-steroidal anti-inflammatories, Schultz struggled as her symptoms continued to flare. Today, she’s mostly philosophic about what she calls “her years-long medical blackout”, which also meant no dental care, but the frustration of lost opportunities remains.
“Even though there weren’t many medication options back then, there were things like physical therapy that could have helped with some of my problems—problems that are hard to retro-fix; I have a lot of chronic pain that’s specifically related to not having adequate care during that period.”
Schultz’s mother home-schooled her until eighth grade. Her transition to a traditional school was tough. With no doctor in the picture, Schultz’s mother couldn’t provide the formal physician’s note the school needed to excuse Schultz from PE. “I had to go, but there were lots of things I couldn’t do,” she says. “And there was teasing and bullying, kids asking what was wrong with me that I couldn’t do things, why was I so weird.”
Schultz found friends, however. “I was lucky to fall in with a group of really good, really smart kids,” she says. She excelled academically, winning a scholarship to Carroll University in Waukesha, Wisconsin.
Back to the Doctor
In college, Schultz took steps to get medical care, investigating insurance through healthcare.gov, but found the premiums beyond her financial reach. Campus health services couldn’t address her complex problems so Schultz toughed it out until 2010, when the stress of writing her senior thesis led to major flare of intense, debilitating back pain.
With support from her best friend and her boyfriend, who she married in 2014, Schultz found a rheumatologist. She started taking her first disease-modifying anti-rheumatic drug but had “one of the worst flares of my life a few weeks later,” she says. She worked with that rheumatologist a little longer, but her systemic JIA still wasn’t under control and the doctor-patient the relationship wasn’t working for Schultz.
She called the office of a rheumatologist she’d found online. “I asked if the doctor had any experience with systemic JIA and explained a little of my situation. I was shocked when, a few hours later, the rheumatologist herself called me back,” Schultz said. “She talked to me for forty-five minutes and told me exactly how she’d approach my care.”
Shultz began a drug regimen specifically aimed at her systemic JIA and within weeks was feeling better than she had for years. Although she still battles the ups and downs of chronic illness—which for her also include fibromyalgia, psoriasis, depression, and others—she is squarely in charge of her care and her life. Managing stress is priority for the naturally bubbly, outgoing Schultz. She practices meditation regularly and relaxes by spending time with her husband and their three guinea pigs, Oreo, Jaq, and Gus Gus.
She’s also found a passion for helping other young adults struggling with JIA and other chronic conditions.
When Schultz found her “tribe” in college, she also began finding her voice, which she decided to use to help people with similar challenges. In 2009 she began writing her NotStandingStillsDisease.com blog to chronicle her personal journey. And, in 2014, she expanded her writing business with chronicsex.org, a blog devoted to discussing relationships and sexuality in the context of living with a chronic illness.
“People with disabilities and chronic illness are often seen as non-sexual beings," says Schultz, who has now presented several lectures on this topic at the Arthritis Foundation's Juvenile Arthritis conferences in Young Adult sessions.
“This is something everyone wants to talk about but has limited space for doing so,” says Schultz, who is currently working on a master’s degree in health care administration and patient advocacy.
With the overwhelmingly positive response she’s gotten from her blogs and presentations, she hopes to make a career in patient advocacy and education, with an emphasis on issues of sex and sexuality in chronic illness.
“Almost half of the [adults in the] United States has some kind of chronic condition, so this is an issue that’s not going away,” she says.