AxSpa: The Cruel Life Partner

Axial spondyloarthritis (AxSpa) is a cruel life partner. They are always with you, bugging you, and telling you what you can and can’t do. They basically take over your entire life and indiscriminately make all decisions for you.

“Hey let’s go out”...“No, we are staying home.”

“I’m going to walk the dog”...“Dream on, you’re going to sit and watch TV.”

“I think I want to coach youth sports!”...“Ha! Get in the bleachers and watch. You don’t have the spoons to coach.”

We know AxSpa is going to shoot us down so dreams don’t become a reality.

“I’m going to be an athlete”

In my endless conversations with Spondys, this is one of the greatest disappointments I hear about. Patients who want to do anything athletic and find out that their bodies just can’t handle the strain.

I do want to preface that this clearly does not apply to all AxSpa patients. We have several amazing athletes in our ranks who have managed to keep ahead of their symptoms. I wish them many many years of abilities.

But, for a lot of us, the time for sports and movement have come to a close.

I ran long distance for 10 years after my diagnosis. I also played ice hockey and American football. And, yeah, even in my teens it hurt, but I also found getting hit to be therapeutic. Like an extreme linebacker massage. Still, after a few years, I just couldn’t keep up anymore. I lost a lot of speed and agility as my hips and spine tightened. Running on the road jarred my bones, and I kept rolling my ankles on the trails because I couldn’t avoid holes and roots.

I retired at 22.

But, I still want to run! I still have dreams where I am running, hopping over bushes, and I sometimes fly, but I've never actually been able to do that.

I want to coach cross country and share the love I still have with America’s youth. But, what if the school expects me to run with the team? I’d have to admit my inability and expose myself. So, maybe I’m better off not doing that.

“I’m going to eat ice cream”

“No, you’re not! It will cause you too much pain.”

Being told what you can and can’t eat by your cruel life partner is one of the most difficult treatments. Certain foods always brought you so much joy, and now the subsequent pain feels like punishment for enjoying yourself.

A big “I told you so!” washes over you and you wonder how you could have been so delusional.

Thankfully, there are a lot of diet alternatives that can help us avoid these triggers. But, they aren’t always as good as the real thing, or they are way more expensive.

If only we were allowed to eat what we want.

“I’m going to get a new job”

“No, you’re not!”

I think about this often. I see people doing their jobs and I think “I would never be able to do that.”

Not that I am dying to be in the service industry, but I know very well I would never be able to be a chef or food server. Way too much time required to be on your feet. Anything that involves lifting, or carrying are out as well. Basically, as long as the job lets me sit, and has no other physical expectations, I can probably do it.

As a teacher, I am fortunate that I can do my job sitting. I was asked by HR when I was applying for accommodations under ADA if, in a crisis, I would be able to run or carry a child. I told them that I could, not totally knowing how I would be feeling the day I would have to do that. But, I said yes, knowing I would probably hurt the next day.

This does pose a problem, however. Even if I found a job that pays more and still allows me to sit when needed, will I lose my insurance? My school district gives me really good insurance. I clearly don’t work for the money, but I do work for the benefits. I know I would never be able to leave and risk not having all my treatments and appointments covered. A lot of my co-workers say they work for insurance.

I also have become aware that private schools don’t necessarily have to provide accommodations under ADA. Therefore I would lose all the supports I fought for when my contracted duties became too straining.

Therefore, my AxSpa is going to keep me where I am, unable to branch out and try new things.

Your cruel life partner

These are just three ways my AxSpa makes unfair choices for me.

But, there are so many more examples, and not as many solutions.

What about you? How does your cruel life partner dictate your daily life?