My Disease is Dynamic: This is What it Looks Like for Me
Something that's getting a lot of attention in the chronic illness community right now is the idea of a dynamic disability. So what is a dynamic disability and what can that look like?
What does "dynamic disability" mean?
The word dynamic is defined as a system or a process characterized by constant change, activity, or progress. So when we say our disability is dynamic, we are saying that it is constantly changing from one day to the next. Of course, not all disabilities are dynamic. Some disabilities are unchanging, but mine is constantly shifting from one day to the next, making it a dynamic disability.
How it started
When my symptoms of AS began, they were pretty minor. I had the typical lower back pain and hip pain, but one thing I noticed was my ever-changing energy levels. One day I would be able to go out and walk two miles, and the next I would be confined to my bed. Before my diagnosis, this cycle left me completely dumbfounded. I couldn't wrap my head around how I could be pretty good one day and then just totally out of it the next.
How it changed
In what I call the “peak of my AS “, I almost lost my mobility. While my symptoms, in the beginning, may have been mild, they didn't stay that way for long. Within 4 months, I was struggling to walk, falling often, and felt like a prisoner of my own body. The progression of my disease was terrifying, and I was forced to buy myself a mobility aid. I didn't see how things could possibly ever improve. My thought process was that once you got to a certain point in your disability, (for me being my loss of mobility), I didn't think there was any possibility of coming back from that. This was when I discovered my disability is dynamic.
About seven months after my AS “peaked,” I was almost completely fully functional again. A lot of things happened within that time span, including biologic treatment, but I ended up never needing my mobility aid again, and I was back to being able to do the things I loved to do before I developed AS. I'd call it a miracle, but after living with this disease for two years I now know better.
My disability is always changing
I would love to say that I'm in remission, but I'm not. I thought I was for a long time because of how well I was doing and how many pain-free days I've had, but certain things will bring the pain back. If I get sick, I tend to flare up for several weeks afterward with severe back pain and fatigue. I also had surgery not too long ago and had one of the worst flare-ups of my life after that. Some days I wake up ready to take on the world and others, I would just rather not leave the bed. This can be really confusing to people who don't live with diseases like AS, but I'm hoping together we can all bring awareness to dynamic disabilities and how they impact our everyday lives.
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