Reflecting on My Past Year with Ankylosing Spondylitis

The past year has been good for me in terms of my ankylosing spondylitis. Just saying that out loud makes me wonder if I’m jinxing it. But the fact is that it was a good year.

I was very mobile for the most part. Pain levels rarely were over a seven, at worst. And I didn’t suffer from horrible, debilitating fatigue most of the time.

Of course, my hips always feel like they’re made of tin, and my back generally feels like I’m 75 when I’m only 34, but it’s still been one of my better years — by a lot.

In 2017, I started Humira (adalimumab). My pain levels were through the roof, my brain fog was worrying, and my slow mornings were messing with my commute to work. I ended up leaving my well-paying, comfy job, where I had great health insurance and access to career growth.

This was due to the time commitment — eight-hour days with three-hour commutes in a crammed, sardine-can bus or train — plus the painful desk life and the lack of flexibility. I became a full-time freelance writer, which I understand is a privilege that not many have, and one I’m deeply grateful for.

It was the best decision I have made — and my last year has proven it.

Things have been tighter financially (OK, a lot tighter), I don’t have great employer-subsidized health coverage, and the freelance life is chaotic at best. But I do have the ability to tend to my body when necessary. I can stretch and do yoga at midday. I can go to doctors’ appointments without asking for permission. And I can nap when I need to, for the most part. Essentially, I can cater to the whims of an achy, weak body at the last moment, without worrying that I’ll be fired.

This has taught me a valuable lesson about the deep and undeniable connection between stress and chronic illness: Our bodies react to chronic stress in ways that we often don’t notice until it’s too late. And while I will always have ankylosing spondylitis — unless they find a cure — I have noticed a definitive change in my disease progression when I limit stressors and forced sleep cycles.

I know I may not always be this fortunate, and I am grateful for the time I’ve been able to freelance. But I can’t deny that my best year of AS has been during a time of great shifts and life changes. And those changes have been for the better. 

I know that being a freelance writer means I can more readily take a leap when needed, and I wish everyone else living with a degenerative chronic illness were able to do so. Sometimes eliminating a few stressors and life circumstances can make all the difference. I know because I witnessed it.

It won’t change the fact that we live with ankylosing spondylitis, but it may make managing our lives a little easier.

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