2019 JA Conference

I went to the 2019 Juvenile Arthritis Conference in Minneapolis this past weekend. It was four days of meeting others with arthritis and learning how to live our best lives. I’m so glad I decided to apply for a travel scholarship back in February so that I could experience it!

I’ve been struggling to write a new post for awhile. A combination of post-graduation life confusion, weird medication side effects, frustrating health, and questioning myself and what I’m doing. Is what I write useful? Why would anyone care about what I have to say? I even have several almost-finished posts sitting in my queue, begun in a moment of confidence but never finished. I’ve been frustrated with myself for not writing, yet dreading the thought of getting back to it. Nothing like mood-altering medications and an end to the only routine I’ve ever known to tear my confidence to shreds.

Then I unpacked my bag from the JA Conference and found the invitation I got to next year’s conference. I smiled, tears in my eyes, and I knew I had to write.

There were two JA conferences this year: one in Houston, and one in Minneapolis. The conferences aren’t just for kids with arthritis. They’re also for parents of kids with arthritis, siblings of kids with arthritis, and young adults with arthritis. There are different sessions for all the different age groups and relationships to arthritis, too. There are JA mom sessions, JA dad sessions, JA sibling sessions, JA young adult sessions, and also sessions for everyone.

I’ve done a lot with the Arthritis Foundation since I finally learned more about them last year, but I’ve never been one for in-person events. Online communication is great! Easy! Going to a picnic? Not so much. That seems terrifying. My local chapter has enticed me out for one-on-one conversations and small meetings, but going out to socialize with a larger group sounds terrifying.

Part of it is because I want to find others like me, but my area doesn’t have anything specifically for young adults. I’m worried about hoping and then being disappointed. Plus, it’s especially hard to find people with spondylitis. I thought that the JA Conference might be the place to find what I wanted, though. If you gather people from all over the country, there have to be some young people with spondylitis, right? Right!

I got a scholarship to attend that covered conference registration and the room. If you’re thinking of attending any Arthritis Foundation conference, but funds are an issue, definitely apply for a scholarship!

I was very nervous about the socializing and very doubtful about the usefulness of the sessions. I had the completely wrong idea. The young adult programming was done by fellow young adults (18-25-year-olds). Topics covered included communicating your needs, relationships, and self-care. I learned about reasonable accommodations for work, which is something I’ve always been extremely hesitant to approach, and I got questions answered about how arthritis is passed on to children. I left with a new understanding of what I need in my rheumatologist, and it encouraged me to finally make an appointment to see a new one. We learned a lot and participated in interactive sessions. We shared our stories and goals and achievements. We played games and explored Minneapolis at night.

It was so amazing to be surrounded by people who understood. Body keeping you from going to a session? That’s totally okay! We can get the info to you! Need a brace or a cane to explore the mall? You’re not the only one. Knowing in my head that there are other people out there experiencing the same things as me is very different from being able to meet them.

It’s such a wonderful experience for everyone there. Parents can learn so much about the bewildering experience of raising a child with arthritis and meet others who are going through the same thing. Kids finally aren’t the only people they know who sit out of gym or use a wheelchair or have to take shots. For me, it was so awesome to meet others trying to balance dreams and goals with bad pain days and reality. And there was so much to learn!

I also enjoyed people’s honesty. It’s too easy to put a positive spin on everything, but the reality is, living with arthritis is hard. I appreciated the people who were able to say that when the culture around disability and chronic illness discourages anyone from mentioning the facts we all know to be true. Through the time we spent together, people could actually open up and dig deep. Of course, the positivity and support were also very appreciated. Because in the end, we have to keep going with what we’ve got.

There weren’t many others from Chicago or even Illinois there, which was really surprising since the conference was so close to Illinois. The only person I met from Illinois was a high schooler also from Chicago. It seems like rheumatologists in the area don’t talk about the Arthritis Foundation as much—basically everyone first heard about conferences or camps or support groups from their doctors, and none of the many doctors I, my sister, or my mom have been to over the years ever mentioned anything. So if you’re a rheumatologist in Illinois, know that the Arthritis Foundation is an incredible resource for people with arthritis!

The unfortunate thing about the conference is that the stress of traveling and the rigorous schedule is not good for someone with an autoimmune condition. Nights were rough, mornings were rough, and the night I got back was especially rough. Ironic that the arthritis conference causes arthritis flares. But it was still very worth it.

I didn’t know how much I needed to meet others like me until I was there and felt the constant anxiety settle for once. More of my energy than I thought goes into pretending that nothing is wrong, and that’s not a good way to spend it. I met so many incredible people, and we truly are a family now.

I really encourage people to get involved with the Arthritis Foundation or other related organization (Spondylitis Association of America, for example). Join the Online Community! Go to conferences! Attend camp! For the adults, the Conference of Champions is next month (September 13-15) in Atlanta. I’ll be there!

Most importantly, come join us in Orlando in 2020 for the family reunion! I can’t wait.

Finally, when I had this post mostly finished, internal doubts and all, I got an incredible email: someone made a very, very generous donation through Ko-Fi. It reminded me that what I have to say really is important, has value, and needs to be said. Thank you to all who have supported this blog, and I wish the best to everyone in this arthritis family.

-Bri <3

I love creating resources like this, but each one takes a lot of time and research. If this post helped you, consider supporting the site with by donating a “coffee” on Ko-Fi! Thanks! <3