A Tumultuous Path

In 1993, Grayson Schultz was 5 years old, sitting in a doctor’s room with his mom, when the doctor gave him a terrifying diagnosis. After six months of appointments, lab work, and tests, his physician said he likely had leukemia and would probably die within the next few months. 

“We had my (sixth) birthday party, and it was the weirdest birthday party I’ve ever been to,” Grayson recalls. “There were a ton of people who were really somber.”

The year prior, Grayson had turned from a happy, bubbly child into a lethargic, frail kid who was in pain and terribly fatigued. Then he developed a recurring rash and joint pain. 

But Grayson’s mom was reluctant to accept his cancer diagnosis and made regular trips to the nearby library at the University of Oregon, where she came across information about a systemic form of juvenile arthritis. She began closely documenting Grayson’s symptoms. Her binder of evidence led to a referral to a pediatric rheumatologist, who confirmed the systemic juvenile idiopathic arthritis diagnosis. 

Like many people with an autoimmune disease, Grayson, now a 33-year-old transgender man living in Athens, Ohio, went through a series of misdiagnoses before being accurately diagnosed.

Systemic juvenile idiopathic arthritis (SJIA), also known as Still’s disease, is a rare autoinflammatory disease that affects the joints. According to the Hospital for Special Surgery, children affected experience arthritis, fevers, and rashes. It can also cause swollen lymph nodes and inflammation of internal organs. The disease can be challenging to diagnose because a rash may be present only with a fever that comes and goes, so children are not symptomatic all the time.

Growing up in pain

The delayed diagnosis led Grayson’s mom to lose confidence in the medical system. The stress of his condition also intensified his mom’s mental health issues, he says, and Grayson didn’t see a medical provider from the ages of 7 to 21. Instead, he took only a nonsteroidal anti-inflammatory to manage the pain.

“My mom was too afraid to get me on meds,” Grayson says. “I should have not only had meds but access to physical therapists and access to a mental health provider—all of these different things to help keep me healthy.” 

Grayson grew up in what he describes as an isolating and “tumultuous, abusive household.” His mom pulled him out of school when teachers were insensitive to his medical needs, and he was homeschooled until eighth grade. 

Young Grayson experienced panic attacks alone and spent nights crying under the bed or behind the couch. He didn’t begin receiving medical care until his senior year of college, when the passage of the Affordable Care Act provided him with affordable health insurance that covered pre-existing conditions. 

Finding a path forward

Finally having health coverage led Grayson on a 10-year journey of seeing multiple rheumatologists and therapists to deal with the physical and emotional toll of his disease. He tried seven different medications. These days, he takes a nightly injection of an immunosuppressive drug, in addition to medications to manage his other conditions.

Still, Grayson experiences breakthrough pain in his knees, hips, ankles, wrists, fingers, and hands that can be triggered by certain foods and changes in the weather.

“Opening jars, turning on the faucet, those things are tricky,” he says. “I love writing by hand, but I can’t do much of that. I enjoy coloring, and that’s something that is not super easy for me to do.”

When he is in pain, he has to make modifications to his work schedule, shifting to tasks that are less hand-intensive. He uses an exercise ball and does yoga stretches regularly. 

“I used to do more meditation, [but] in the last several years, it’s been really hard from a focus standpoint,” he says. “If I’m feeling more like being in a meditative space, I’ll do other things, like I’ll go hiking.” Moving his body daily, he has found, helps keep his pain levels from increasing. 

Grayson’s overall pain at times is further complicated by other health conditions, including plaque psoriasis, mast cell activation syndrome, and asthma. The psoriasis causes itchy sores to develop on his scalp. The mast cell activation syndrome causes mild anaphylaxis and deep bone pain when triggered. And the asthma can flare up with a burning, throbbing sensation in the lungs that affects his breathing. 

“I recently had top surgery,” he shares. “It’s basically like a bilateral mastectomy to make my chest more masculine, and my asthma, which has been under control for several years, acted up as they were intubating me.” 

While living with his medical conditions has presented challenges, Grayson has moved forward with the life he wants to live. He started playing hockey in 2019. “Aside from surgery in July [2021], learning hockey was probably the hardest thing I’ve ever had to do,” he says. 

Learning to skate was not easy, but he found his hypermobility was a benefit to being a goalie. “I can make saves that other people can’t,” he says.

Turning personal experience into a lifelong passion

Grayson’s experience with chronic pain and navigating the health care system led him to build a career as a health care writer, disability activist, and sex educator. He builds awareness and engages in conversations on these topics through presentations, speeches, podcasts, and articles. He has two award-winning blogs, “Not Standing Still’s Disease” and “Chronic Sex,” and has been published on news sites like Healthline, Health Central, and Ask Men. He currently works as a chronic disease prevention communication specialist for the Wisconsin Department of Health Services.

With a master’s degree in health care administration, Grayson speaks passionately about addressing the discriminations, biases, and limitations of the health care system.

“What are the ways that we can get patients engaged in their own care while also acknowledging barriers that exist?” he says. “Racism is a barrier. Lack of transportation access is a barrier. How are we going to address those things from a societal standpoint?” 

He finds social media a helpful space where people can gain resources, learn about medication options, hear about treatment experiences, and share coping techniques.

“Most people who are newly diagnosed are scared. They don’t know what’s going to happen. They don’t know what’s going on in their bodies,” he says. “They really just need to have somebody to tell them it’s going to be okay.”

For individuals struggling with autoimmune diseases, physical pain can greatly affect emotional well-being and relationships, including intimate relationships. Grayson encourages people not to feel shame about their disease and to be honest about their experiences.

This is what has worked for Grayson and his partner, McGravin, when they lived in different states. They had open conversations about Grayson’s pain levels as a way to maintain closeness and honesty during their long-distance relationship.

As a person who is transgender and queer, Grayson has encountered multiple roadblocks in the medical system. When he was younger and married—prior to coming out as trans—he asked his doctor about getting his tubes tied. The doctor dismissed the notion due to Grayson’s age, saying his husband “might change his mind” on not wanting children. “It was not until I came out as being transgender that I was able to have any of these conversations with providers that weren’t gatekept,” Grayson says.

In many ways, Grayson says, people managing autoimmune diseases need to be their own advocates. The best thing a person with an autoimmune disease can do, he says, is to understand their condition.

“Just learn everything you can about it,” he says. “That has saved my butt more times than I would like to admit.” 

—Tara Bracco