In Remission, Out of the Community?
Last updated: March 2023
This community – the one you’re visiting right now via this website – has done so much for me.
It’s where I learned what ankylosing spondylitis was in the first place. It’s where I learned to accept my diagnosis. It’s where I learned that I’m not alone.
This community is diverse — a mosaic of people of all ages and backgrounds, with one thing in common: this disease. When our own friends and family members can’t understand what we’re going through, we can take comfort in the fact that someone else out there does. As we’re gritting our teeth through a painful flare-up or mentally preparing for a weekly injection, we know that someone else, maybe on a different corner of the globe, is right there with us.
Here, I found other 20-somethings who get funny looks when they say they have arthritis. I found other women who struggled to receive a diagnosis due to the belief that this is a “man’s disease.” I found other athletes mourning their pre-illness bodies and finding new ways to participate in the sports they love. Here, I found others just like me.
But now, for the first time in five years, I’m wondering if “here” is my place anymore
As you may know, ankylosing spondylitis can be a dynamic disability. This means that the degree to which it affects one’s ability can ebb and flow. Some days, we might be unable to walk, shower, or even get out of bed. Other days might be good — we might feel well enough to exercise or even dance. Thanks to a mix of my biologic treatment and luck and probably magic, I’ve had a lot of good days lately.
When I say, “a lot of good days,” I mean I’ve been in remission for over a year now. The worst days of my illness seem like a distant nightmare. While I still clinically have ankylosing spondylitis, my symptoms are infrequent, to the point that I feel like a fraud when I describe myself as having a disability. Aside from my injections every 10 days, my life is relatively normal.
I feel like an outlier in my own community. How can I authentically support others who are suffering when I’m hardly suffering myself? How can I paint a realistic picture of what living with this disease is like when my experience is far from the norm?
I’ve lost my symptoms, so do I lose my community too?
The answer, I hope, is “no.” Along with wanting to maintain the relationships I’ve built within the ankylosing spondylitis community and the solace I find here, I don’t want to lose this community because I know there will come a day when I need it again, just as badly as I did five years ago. Remission doesn’t last forever. My past was pain-riddled and my future will be too —this is something I accepted when I learned that I had an incurable, progressive disease.
Maybe the fact that I feel like an outsider to the AS experience is just another part of the AS experience. Although I don’t need support as much as I once did, I am grateful for the network I found here. I hope to stick around for my bad days and my good days, too.
Have you ever had to take a leave of absence from work due to your symptoms?
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