Dealing With a Chronically Ill and Changing Body

When we talk about ourselves (and other people), we often reference character qualities as if they’re immutable and innate. We have expectations for ourselves, perhaps shaped from being told countless times during our foundational years that you’re creative, or you’re good at sports, or you’re great with math. We’re constantly told that when you grow up you’ll do this or that. You’ll go to college, marry, have a career, build a family, buy a house, etc.

Of course there are so many things that are problematic about all that, but it’s hard to not develop expectations for yourself when you’re young and you don’t know any better. But those things are societal norms (wildly ableist, I might add) mixed with parental hopes.

One thing that was not emphasized during my childhood was the possibility of a prematurely changing body. The possibility that I may develop a chronic illness, that I may end up developing a disability at an early age. Not only that people change, but that I may change in significant ways, body, and mind.

But if my AxSpA has taught me anything, it’s that the only constant in this life is change.

What my body used to do

When I was younger, I was an athlete. I ran countless sprints and laps around the soccer field while training for the start of the season with only some nausea and sore muscles to contend with. I was captain of my high school basketball team and beat the neighborhood boys in pick-up games well into my 20s.

I tackled rigorous mountain biking trails with my father, hiked trails to mountain peaks in New England, and completed day-long kayaking trips in New Hampshire and Maine. In my late teens and early 20s, the mild AxSpA symptoms in my lower back were always eased away with NSAIDs and a good night’s rest.

How my body has changed

I knew at some point my body would act differently. I knew eventually my body would give way, to change with age. But it did not occur to me (and this is clearly my own blind spot) that I would experience a decline in the agility, stamina, and overall function of my body so soon.

Now, in my mid-30s, my body doesn’t do half of what it used to ten years ago and that’s hard to wrap my mind around. Kayaking leaves my back in agony because of the arrangement of the seat. Running is hard on my knees and my lower back, being a high-impact activity. Hiking mountains are out of the question (for now, but I’m hopeful that it won’t be forever). When I do hike, I have to choose my trails wisely and keep a close eye on distance so that I don’t throw my body into a flare.

Every athletic activity that I attempt has to be carefully planned, and I make sure to check in with my body often. That was never the case when I was younger, when I could be careless and push my body to the limit in the name of ‘getting in shape’.

Dealing with a changing body

I can’t help being jealous of all the women in their 30s, 40s, 50s, and 60s who share their long and rigorous outdoor adventures on social media. I can’t help but feel like that should be me. I can’t help but think that my body feels different than it should. Sometimes, I can't remove myself from my own ableist mentality.

That’s not the case, of course. My body is 35 and it feels the only way I know 35 to feel. There’s no way around it. Everything I have done to my body and everything that’s been done to it, intentionally or not, has shaped and changed it. There's nothing abnormal or less than about it.

Honestly, sometimes I find it difficult to come to terms with a disabled body, having memories of what my body used to do. My body has changed whether I like it or not, and it will continue to change. It will change despite my mind’s insistence on clinging to the past or dreaming of a different present.

Sometimes I can’t help myself. As much as I try to project optimism and to adjust my expectations to meet my reality, I still find this relatively recent turn of events (my diagnosis and gradual accumulation of symptoms) upsetting. And while I manage the inevitable and continual changes within my body, I am still grateful for what I can do.

After all, I know more change is to come. Maybe this early round of changes will better prepare me for those ahead.