My Life Didn’t End When I Was Diagnosed With AS
Seven years ago, my already chaotic, 18-year-old world was rocked. Amidst a blur of final exams, breakdowns and breakups, my back and hips caught fire, or at least that’s how it felt. Days went by, then weeks, then months — and the pain wasn’t going away.
I attempted to limp my way through second-year university, desperately trying to appear normal, playing it off with lighthearted jokes, then sobbing behind closed doors. I didn’t know it at the time, but I had ankylosing spondylitis.
I felt like I'd been robbed
When I was finally diagnosed at 19, I felt like I had been robbed of my 20s before they even began. My whole future played out in my mind while I tossed and turned at night — images of myself limping down the aisle at my own wedding, or lying in bed while the rest of the world carried on. I grieved for my future self.
Now, I’m 25, and I’m happy to report that my life didn’t end when I was diagnosed with AS.
I wish I could give my past self solace
I wish I could float back to that time, like some sort of solacing ghost, to hug my 19-year-old self and tell her about my life now.
I would tell her that the biologic medication is working. It’s working so well that I have many pain-free days. I can exercise, hike, and do almost anything I want to.
I would tell her that I’ve met amazing, supportive people who love me and my chronically ill body.
I would tell her that my life has become richer because of my illness. I work with people with disabilities, and I can support them better because I’ve been through something similar myself. I’ve found a passion for accessibility, making the world more inclusive, and spreading awareness of invisible disabilities.
I would reassure her
If I could, I would sit on the bed next to my past self and revisit that period of hell, although I wouldn’t want to stay for long. I would reassure her that her life isn’t over, and tell her stories of my 20s so far, of all the fun I’ve had. I would hope she’d feel a little less scared.
Of course, when I was 19, I didn’t know any better. I didn’t have a comforting ghost from the future — all I had were words like “permanent” and “progressive” and frightening internet threads. I still have AS and I will for the rest of my life — but now I know that in between the bad days, there will be good ones, and in between the grief, there will be hope.
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