When I first started this column, I had so many things I wanted to share with families coping with juvenile arthritis (JA). I’ve written about everything from making home injections less painful to ergonomic backpacks. As this will be my last column, I wanted to share the most important thing I’ve learned over the years.
The most valuable piece of advice I can pass on has nothing to do with treatments, doctors, accommodations, or arthritis hacks. It’s that you need to hold on to hope and remember that a life with JA can still be a happy one. Even if the future looks a little different than you expected.
Childhood goes on
Through the years of writing, I opened up about some of my darkest and most vulnerable times dealing with JA. But that doesn’t mean I’ve had a bad life or felt like childhood passed me by. I was still a child and enjoyed it at my speed. Sometimes I was zipping down hills on my bike or jumping off the diving board into the pool. Other times, I enjoyed my childhood from a rental wheelchair at Disney World. Or even from the couch, buried under my art supplies with “High School Musical” on TV.
Yes, there were tough times. But there were good times, too. There was a summer when I was in the hospital due to a severe flare and missed Fourth of July celebrations. A couple weeks later, I was well enough to go on a cruise and visit pink sand beaches and play with other kids on the ship.
Eighth grade was a mess, between flaring, dealing with awful side effects, coping with depression, and even working through a little age regression due to the stress. But I had a wonderful high school experience because I found kind friends, and it was only made better when my disease activity became very low after finding a JA treatment that worked for me. I danced the night away at prom and walked across the stage pain-free at graduation.
It’s not just memories
Writing and opening up about my darkest times made me realize I have carried a lot on my shoulders as a child with JA, and I still carry these burdens and unresolved feelings in my heart as an adult with juvenile-onset arthritis. But it also showed me that difficult times eventually passed, even if they were long and painful, and there are always moments of light in the darkness.
When I first started this column, I was in rough shape. And I’ve gone through some horrible flares since then. There were months when I felt deformed from the pain and stiffness yet hid it well from most people.
But there also were lots of light moments, even during the darkest periods. I made art. I improved my writing skills with the help of my lovely editors and dedicated professors. I graduated from college with honors. I started an internship that became my full-time job. I made new friends and had some adventures. I got engaged to a wonderful, supportive man. And you can keep reading about that full life on my blog or on Instagram @girlwitharthritis.
The point is, I’m going to keep going out and enjoying my life, despite dealing with this disease. It’s just a bad day (or week, month, or even year), not a bad life.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to juvenile arthritis.
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