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Dynamic Disability Means I Get To Define My Experience

For so long, using the term "disabled" to describe myself felt so it’s off-limits to me. It still does. Unless my AS severely worsens, it always will. So I don't use that term.

Because there is such poor education around disability and such poor disability visibility, I have always felt as though I had a little understanding of what it might really look like.

To provide some more context, I lived most of my adult life without issue caused by ankylosing spondylitis. I could walk and move and do everyday activities perfectly fine until I was about 28. Before then, I had recurring bouts of uveitis, which required me to skip classes and call out of work. But I never thought of this as a vision disability — although for so long it was. Limited vision, cataracts, eye pain, chronic photophobia — it really got me down over the years.

Looking back, I see now that a disability can be very dynamic

It doesn't look one way.

As I got into my late 20s and neared my diagnosis in 2017, my life started becoming more and more affected by ankylosing spondylitis. I left a job that I liked, which paid well and provided insurance because I could barely get through my day.

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Horrific pain and immobility mixed with chronic brain fog all due to forced sleep cycles, long commutes, and public transport (plus sitting in a chair for nine hours a day!) were destroying my body.

I tried to ask for arrangements that could help. I got a standing desk. That was fine. I was able to work from home every now and again. Cool. And yet my body was giving up on me.

This is when I first started considering what disability truly meant. My employer discussed taking a leave of absence, as I could not function like other people. And it had a profound effect on my physical health and my mental health.

I found that walking always hurt

My love for swimming was being affected. Having the stamina and energy to get through my day was limited. I couldn't sit for more than 30 minutes. I couldn't reach certain things or bend down or move sometimes. Sometimes my joints would get so swollen I'd want to go to the hospital. My breathing was affected.

Cognitively, brain fog was chewing at my capability and drive and creativity. My X-rays and bloodwork were showing elevated markers of inflammation, and I felt out of control. Humira didn't even help. I started getting depressed and highly anxious.

So I quit my job--at 32

According to the CDC, “A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”1

I think the nuanced part of having a dynamic disability, which is disability that changes day to day or circumstance to circumstance, is that I feel guilty for embracing a term that I otherwise would reserve for people who have it worse than me. Note that "worse" is a relative term.

There’s this level of guilt that comes with managing a chronic illness that is problematic and unfair and rooted in an ableist society, which teaches us that pain and disability and needing help should look a certain way or sound a certain way.

Invisible illness

More so, people with invisible illnesses are often are treated as some histrionic, psychosomatically sick, or lying. If we’re not laying on the floor bleeding, it’s hard for anyone to believe that we need help.

For all of these reasons, I have found it hard to find my place in a world where so many people are struggling more than me, especially due to racial barriers or limited access to resources or support community. And yet, I am struggling.

I also consider the philosophical implications of using a term that is marginalizing. What do I hope to attain by doing so? Can I help others? Will I be able to ethically take part in this community despite my amorphous and dynamic experience of disability?

In the end, I have a dynamic disability, as well as all the nuanced and uncomfortable questions that come along with it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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