As Juvenile Arthritis Awareness Month comes to a close, I’ve been thinking. Of the difference between my experience of juvenile arthritis (JA) as I grew up in the 1960s and 70s, the experience of those who came after me, and what happens next.
A Danish rehab hospital played a large role in my tweens and early teens. I spent much of my time there between the ages of 11 and 14. There were lots of us, kids with juvenile arthritis. And we were all on the inexorable path towards a wheelchair. Some of us meandered the route, others (like yours truly) were in the express lanes.
I very quickly found out that I was a guinea pig in the treatment they gave me and equally quickly found out that nothing really worked. In retrospect, that was probably not because my JA was particularly virulent — although it certainly was — but rather because back then, they knew nothing about JA. We were little lab rats, subjects in an ongoing battle to find something, anything, that worked. That battle was usually won by the disease.
They tried gold shots, but I developed side effects before it had a chance to do anything. I was part of a study investigating whether a mix of antihistamines and Tagamet, a medication for acid reflux, would have an effect on my JA (it didn’t). Steroids kept me from dying at age 12 and was used for others as the primary treatment. For many, that resulted in an erosion of bones, leaving behind little fat fingers with no joints left inside. At 14, I spent a month in a body cast on the theory that keeping my hips immobile would calm the raging inflammation and enable me to walk again. With what we know now, being kept immobile for four weeks obviously made my hips fuse. I never walked again.
All these years later, I’ve met many people who developed JA 20 or 30 years after me and in a different country. For so many of them, JA is an invisible illness. Britt, friend and fellow writer here on the RA site, can run, and swim, and plans to climb a mountain. Gabi Rojas spent time in a wheelchair as a child, but a biologic gave her freedom, and she is now a professional dancer. Jen Horonjeff biked 1400 miles to raise awareness for juvenile arthritis. This is not to say that JA doesn’t affect them. It does and in ways that are very similar to what I feel. But still. Such lives were unheard of in my childhood.
Britt rockclimbing, 2014
Time didn’t cure all — if only it were so. JA being invisible doesn’t mean it’s not there. So many of my younger friends are living with the challenge of looking fine, but still dealing with the symptoms. Some are in remission, others fight a back-and-forth battle with JA. Others still haven’t found a medication that works for them. So many of us are still bionic, requiring multiple joint replacements and other surgeries. So many children still have to go through the agony and isolation of JA.
But I keep coming back to how far we’ve come. The JA of today has many similarities with the disease of my childhood, but also many differences. No longer is it an inexorable path to a wheelchair. These days, many kids with JA are physically active in a way that I and others of my generation only ever dreamed of.
Do I wish that I had been born later? At times. At times it is difficult to watch these active and, to me, relatively normal lives, knowing that we have the same disease. But as I am not equipped with a time machine or a fairy godmother, I try to leave that behind. Useless wishing only makes you depressed.
Instead, I marvel at what’s possible. And my heart aches with how far we still have to go on this journey. We have come further than I ever thought would be possible in my lifetime, but there is so much more still to do. I have faith, though. Faith that the next generation will see progress similar to mine. That in 20 years, people like Britt and Gabi and Jen will marvel at what’s become possible for JA.
That maybe it will be a cure.
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.