They're Back in the Game
A few years ago, Kirsten Schultz thought they'd have to give up everything they'd been working for. Their complications of RA almost became too much—almost. Read our latest installment of #HappyTears.by Rosemary Black Health Writer
As anyone who lives with a chronic illness knows, the plans you have for your life can’t always be counted on. Sometimes, there’s no amount of trying that will ever be enough to meet those hoped-for goals. And sometimes, you have to let your body lead the way to a future your never imagined.
In 2010, Kirsten Schultz, now 31, was working on a master’s degree in Islamic studies and Arabic language at the University of Wisconsin in Madison. Their ultimate goal? To make a difference in the world by working as a diplomat. (Schultz uses the pronoun they). And they’d gotten this far by sheer determination. Schultz had literally clawed their way through college, fighting symptoms of rheumatoid arthritis every step of the way. Not only did they work multiple jobs, Schultz battled frequent illnesses and disease flares. But by the time they began work on their graduate degree, new medication had gotten Schultz’s symptoms mostly under control—until they weren’t.
Like most treatments for RA, Schultz’s medication works to suppress the overactive immune response that’s causing the joint pain and inflammation; as a result, patients are often more vulnerable to infections. And during grad school, Schultz seemed to get anything and everything that was floating around campus.
Professors docked points when they missed classes, which happened frequently. Some days Schultz just couldn’t get there. “Daily Arabic classes really required near perfect attendance and missing even one day a week meant a lot of makeup work,” Schultz explains. “On weeks where I missed more than one day, I was honestly just a body in a classroom. Physically and emotionally, I felt like I was drowning.”
Battling these illnesses on top of the fatigue, pain, and brain fog that was just part of living with their arthritis eventually made it almost impossible for Schultz to manage their course load. Something was going to have to change. After 18 months of struggling, they decided to withdraw from school in 2012.
“Everything I had worked for for so long, I couldn’t do anymore,” Schultz says. “Dropping out of school was one of the hardest things I’ve ever done. As someone who loves learning, being unable to continue studying a subject I was incredibly passionate about was devastating. To admit I was sick enough to have to stop school alone was incredibly hard to do. Many people with disabilities struggle with coming to terms with limitations that we face, and this was that moment for me.”
And over the next year, Schultz’s depression grew deeper. A close friend had died. Their dream of having a career in world diplomacy was over. And their body just kept letting them down. But somehow, from somewhere deep inside, there was a little voice that told them not to give up.
One of the first things Schultz did was put their energy into their blog. “It was an outlet for me to process what I was dealing with—and help others by talking about it,” they explain. “Researching topics to write led me to writing for other organizations and to some really cool opportunities such as attending conferences using a press pass.”
They also started volunteering, just a few hours a month at first, with the Arthritis Foundation’s Arthritis Ambassador Group as way to help enact change, and soon was invited to speak at events.
“After that, my volunteering picked up,” Schultz says. “I was working with not only the AF but also with the International Autoimmune Arthritis Movement, National Arthritis Research Foundation, and other arthritis-based orgs. Doing all this helped me truly feel like I was giving back.”
By 2014, Schultz felt like their life was starting to pick back up. They got married, continued with their advocacy work, and even started a new job at the local medical school, which opened their eyes to whole other side of health care, especially the quality-improvement process. “Seeing what happens on the healthcare-system side and combining that with what I've seen from the patient side pushed me to want to help improve the overall system,” they say.
Schultz had found a new path, perhaps the one they were always meant to follow. In 2015, they began a new master’s degree in health administration with a focus on patient advocacy. But this time, they enrolled in an online program to better protect their health.
"Going to school online was such a better fit for me,” Schultz says. “I could work on classwork, group projects, and attend virtual classes without having to worry about germs, parking, or even wearing pants! Once I got back into the grove of attending classes, I felt amazing. The excitement that I have always felt about learning came back and, for the first time in three years, it felt like my brain fog had lifted."
Finally, in 2017, Schultz earned their degree. "To go from being unable to finish my previous attempt to finishing this one that meant so much more to me personally because of the subject matter—it’s something that I can't describe in words very well. Just knowing I was smart enough and could accomplish this was well worth the degree."
But even with this huge accomplishment to launch them into their next chapter, Schultz’s health pulled them back once again. On top of their RA symptoms, Schultz was diagnosed with two additional conditions, hypermobility syndrome, which had been causing increased joint pain, and mast-cell activation syndrome (MCAS), an immunological condition that can cause anaphylaxis and near-anaphylaxis.
“The hypermobility was something that I have always had, but it was never diagnosed,” Schultz explains. The MCAS makes them extremely sensitive to certain common chemicals. “I can’t walk down the detergent aisle in the supermarket because I can’t take the fumes. Just breathing in certain products triggers symptoms of mild anaphylaxis for me.”
For a while, Schultz opted to work part-time and continue advocating for other people via their websites. Along with their blog, they founded Chronic Sex.org, an online forum for people who have disabilities to discuss and learn about sexual issues. Schultz got the idea after attending an Arthritis Introspective conference at which they realized that a lot of the attendees, old and young alike, didn’t really know much about basic sexual education. “I realized how many people with disabilities get excluded from sex ed, and I wanted to start a forum to help change that,” Schultz recalled.
Schultz has traveled internationally to speak at conferences, launched a podcast, and is in the process of developing a Chronic Sex research arm, called ORCHIDS: The Organization for Research on CHronic Illness, Disability, and Sexuality. Then last year, Schultz got their dream job working for a nonprofit dedicated to advocating for the rights of people with disabilities.
"I feel very honored to [help] create positive change. While working in health and sexuality are completely different than what I expected to be doing when I finished my undergraduate degree, I've been able to find ways to still do things I enjoy like research and giving talks,” Schultz says. “Being able to take on projects and get grants has been wonderfully emotionally. These were things I didn't think I'd be able to do in 2012, and I feel very lucky. My health is still an issue, but thankfully it gets to be on the backburner more days than not—and that's pretty great."
Also pretty great? Schultz’s journey with arthritis helped them discover another passion. They’d been in physical therapy when they’d discovered a local LGBTQ hockey team. Throughout their work with Chronic Sex, Schultz had learned a lot about who they were, too, including that they were non-binary and pansexual. Their marriage had ended partly as a result.
"I had been so sick all the time and always had to figure out how to manage my health issues,” Schultz explains. “I never really had time to have a social life and, with the divorce, I needed to fix that.” So Schultz ask their P.T. if it’d be safe to play, and the therapist was “110% supportive,” Schultz recalls.
“The first day of hockey was comical, and I was very sore afterwards,” Schultz says. “I mean, here I am living with arthritis and my body doesn’t move correctly anyway, and there I am standing on skates on the ice. But I loved it and, even though I only skated for five minutes of the entire hour, I couldn’t wait to go back.”
Schultz plays goalie, a position that taught its own set of lessons. They say: “As goalie, I have learned that one night you can stop every puck and another night, you can stop none. There is a lot of luck involved. I think knowing this has made it a lot easier for me to let go and not feel like I have to be in control all the time.”
The team has also been a source of new friendships. “The amount of support that I have gotten has been incredible,” Schultz says. “Having a really large group of people to lean on for support has been completely life-changing.”
Schultz always likes to have a plan in place, and they’re feeling good as they look forward to the years ahead: “I am still going with the notion of not putting a lot of expectations on myself and on what my future looks like,” they say. “But I've started to work with my body more often than against it. Funny enough, part of teaching other people about self-love and self-esteem has meant having to learn what I teach! That alone has been worth this entire journey. Instead of getting upset at my body, I give myself space and grace—to mess up, rest, and try again tomorrow."