JIA

ACR 2014: Lessons Learned from Young Adults with Rheumatic Disease

I’ve come to ACR 2014 on a mission. As both an internist and a parent of a child with JIA, I’m focused on learning everything I can about new research on the microbiome, autoimmunity and arthritis. You’ll find me rushing from one scientific session to the next, taking detailed notes and eagerly gleaning wisdom from my rheumatology colleagues. But, when all is said and done, the lasting impression that this conference will leave with me won’t be on the microscopic level.  It will be the image of two articulate, vibrant and successful young women reminding me what the end game is all about.

Here’s my take on lessons learned from today’s ACR 2014 session “Young Adults with Rheumatic Disease: The Patient Perspective.”

* Kids with arthritis can feel isolated from their peers.
“J” was diagnosed with JIA at age 11 months, but never met another kid with arthritis until she was 18 years old. As a result, she felt lonely and isolated, with no other kids able to relate to her experiences.  She talked about the social consequences of not being able to participate in soccer and gymnastics, with friends unable to comprehend why she couldn’t participate when she appeared so well.  She spoke about living with roommates for the first time, who thought she was “boring” because she spent so much time in her room, conserving her energy.  And she spoke about an underlying shame about her arthritis, keeping quiet about her disease because she lacked the words to describe her experiences.

* Meeting other kids with arthritis helped them find their voice.
When “J” was 18 years old, her rheumatologist suggested she go to summer camp to be a counselor for kids with arthritis.  In doing so, her whole life changed.  Now, she could discuss shared experiences and learn how others overcame obstacles.  Suddenly, someone else “got” how it felt to be constantly exhausted or limited by pain.  By discussing her arthritis with peers, she found the words to describe her experiences with others who don’t have arthritis.  She dropped the shame of having arthritis and developed her voice.

* Resiliency starts with role models.
“J” and “K” talked about how being a teen is hard, but being a teen with rheumatic disease is even harder. They were dealing with the normal trials and tribulations, but also added on feeling exhausted and dealing with multiple doctors appointments, pills and injections. Having role models and mentors helped them see who they could become and what the future could look like. They now had an image of what it looks like to persevere. “J” described that role models were a crucial first step towards resiliency.  In turn, they’ve come full circle and now have the opportunity to mentor others.

* With rheumatic disease, success is achievable but the pathway may be different.
Both “J” and “K” are successful young women with advanced degrees in scientific fields. During J’s 2nd semester of college, she had to withdraw from school due to illness. She accepted this was her reality and that she would reach her goals in a different way. Eventually, she decided to set aside her original goal to become a medical doctor (“residency just wouldn’t be for me”) and instead is working on her PhD.

* Beyond meds: Rheumatologists have a huge role to play in mental health.
When listing the “caring adults” that had the biggest impact on their lives, both of these women listed their rheumatologists first. They see a role for the rheumatologist to alert children to resources for support (support groups, camps, mentors) and to encourage them to take advantage. They discussed the importance of screening for depression and anxiety, as there is ample evidence that these may go hand-in-hand with living with a chronic disease. They also discussed the critical role that the rheumatologist has in helping teenagers find their voice, especially as they transition to adulthood when they will advocate for themselves.

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