“But you don’t look sick.”
How do you explain pain that leaves no apparent physical mark? How do you make people see that while you look perfectly healthy, your body is attacking itself from the inside out.
I have juvenile Sjögren’s disease, a rare autoimmune disease where my immune system mistakenly attacks the glands that produce moisture, causing severe dry eyes, dry mouth, full body pain and debilitating fatigue. In my case, it also triggers attacks that feel like my entire body is shutting down.
For a week after my first attack, I told no one outside my immediate family. I needed time to process the shocking pain. When I finally opened up about what happened, I discovered something almost as difficult as the attack itself: people couldn’t understand what I was going through or how to help.
Getting care was just as hard. I had to travel hours to Stanford just to see a pediatric rheumatologist.
My story is not unique. These specialists who treat chronic inflammatory and autoimmune diseases in children are very rare across the globe. The Arthritis Foundation reports that there are only about 420 board certified pediatric rheumatologists in the United States, or roughly one for every 700 children living with a juvenile rheumatic disease.
Eight states have no pediatric rheumatologists at all,
and six states have only one.
These factors combined mean that children often travel long distances for appointments, with an average of 57 miles each way, more than double that for other pediatric specialties.
This shortage is not expected to improve anytime soon.
Courtesy of Jocelyn Hanson
Jocelyn Hanson
A 2023 study in Pediatrics found that the clinical workforce in pediatric rheumatology was only 0.27 full-time equivalents per 100,000 children in 2020, and by 2040 it’s projected to rise only to 0.47, still far below what’s needed.
That lack of access can delay diagnosis, worsen long-term health outcomes and deepen emotional isolation for kids like me who live with conditions no one can see.
This is exactly why I founded Room4Rheum: a youth-led, global platform that makes pediatric rheumatology visible, accessible and centered on those who live it.
Room4Rheum’s mission is to bridge the gap between patients and the professionals who care for them. We create space for young people with autoimmune and rheumatic diseases to share their stories, educate peers and providers and advocate for change for rheumatology.
But we don’t stop there. Room4Rheum also works to tackle the specialist shortage from another angle: by reaching medical students and future doctors. Many of them never receive in-depth education on pediatric autoimmune diseases. We host collaborations with clinicians and medical schools to improve early training and help medical students see pediatric rheumatology not as a niche field, but as a vital one.
Our belief is simple: youth can lead change in health care.
Every young person who turns their pain into advocacy makes the system a little more compassionate and a little more human. Whether it’s by organizing awareness events, mentoring newly diagnosed peers or speaking to medical audiences, the youth in our network are redefining what it means to live and lead with invisible illness.
Still, much more needs to be done.
We need more specialists, more research funding and more youth-centered support systems that recognize invisible illness as real and urgent. Policymakers, educators and health care leaders must prioritize funding for pediatric rheumatology training programs and support equitable access to care across states.
Because when young people with invisible illnesses are believed, treated and empowered, they don’t just survive … they thrive.
The world faded the day of my first attack, but that moment also opened my eyes. I saw what I wanted to become: a future pediatric rheumatologist and an advocate determined to make sure no young person feels unseen in their pain again.
Through Room4Rheum, I’ve learned that youth can transform the systems meant to care for us.
We just need the world to make some room for rheum.
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Jocelyn Hanson is a 16-year-old Sjögren’s disease advocate and the founder of Room4Rheum, using her voice and lived experience to bring hope and awareness to others.
