person pointing one way and a spine pointing the opposite

Every Choice I Make Is Dictated By AS

Something that able-bodied people often forget, I think, is that disabilities are ever-present. Even on the “good” days when I’m acting “normal,” AS is at the front of my mind. Even when I’m not talking about AS or groaning in pain, it’s there.

It's always a consideration

No matter what context or conversation I’m in, I must consider AS. I must plan and execute every part of my day based on pain, medication, and other AS-related factors. It’s like having a broken arm for the rest of your life. Imagine going about your usual activities with a broken arm; every part of your day would be affected, from sleeping to working to socializing.

As soon as a thought crossed your mind, like “I should go to the gym today!”, it would be immediately interrupted by, “Oh, right, I have a broken arm.” You would be hyper-cognisant of the limitations imposed by your broken arm. AS is the invisible broken bone that dictates my life. I want to live each day without limitations, but then I remember, “Oh, right, I have AS.” It is mentally exhausting and unrecognized by those who cannot see my pain.

It affects every part of my day

I wake up every morning and my first thought is usually “Ow, that hurts.” I take a mental survey of what hurts the most and how bad it is, so I can try to get out of bed in the most painless way possible. Next, I have to eat breakfast right away so I can take my NSAID medication that must be taken with food. As a student, I head to the library to study.

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Before boarding the bus, I have to decide if I will board a busy bus that I will have to stand on, or wait for an emptier bus to come along so I can have a seat. When I get to the library, I choose where to sit based on which chair is most firm. While I study, I must decide how long I can study for based on how bad my pain is. When I work out, I have to be very conscious of choosing exercises that will not worsen my pain.

Later, when hanging out with friends, I can’t agree to any plans that involve a lot of standing or walking. When I go to bed at night, I have to think about what position I will fall asleep in to make sure it won’t be too painful to get up the next morning. Although I live a relatively normal life, AS is there. It’s always there. Every decision, big or small, is affected by AS in some way. It is cognitively draining.

I just want people to be aware

I’m not expressing this for pity or because I think any changes need to be made. I just want the people in my life to be aware. I want my friends to know why I might seem uncomfortable making plans to hang out, I want my family to understand why I’m hesitant about long car rides, and I want everyone to understand why I move throughout the world with a level of caution that I didn’t before. Acquiring a disability isn’t something that happened on the day I was diagnosed and then retreated into the shadows. It is something that clouds my entire life, affecting big decisions like career choices and small decisions like which chair to sit on. This is the mentally difficult side of having a chronic illness — every day is a fight to find peace while AS provokes chaos.

I am learning how to cope and adjusting well to this new, chronically ill life. I wish I could make day-to-day choices with the freedom that I used to, but I don’t have that luxury anymore. Ankylosing spondylitis adds a new layer of complexity to everything. I make choices based on what is best for my pain and my health, in attempt to control everything I can while living with an uncontrollable disease.

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