My Experience

What is a Disability?

Disability is an interesting word. It’s thrown around in a lot. When someone first used disability to describe what I was going through, I was a bit shocked. I couldn’t believe someone would label me that way. I got angry and frustrated. Then I started to think, do I have a disability? What does it mean to have a disability?

When I look at my life, I try to focus on the positive. There are so many things that my body does right. On the flip side, my body tends to struggle on a day to day basis. Just today, while biking my heart went to 200 beats per minute. I look at that number and say, “That’s probably too high for biking but it could be worse.” I think the highest I’ve ever seen my heart go is 230. Truthfully, I don’t remember because it happens with such regularity it doesn’t surprise or stand out to me. There are things that happen when your heart goes that fast. I can’t break down the anatomical stuff. I don’t understand it fully but my autonomic neurologist called above 200 the heart attack zone. I need to clarify that your heart is not supposed to go that fast. It’s incapable of functioning at full capacity when it’s that fast. It doesn’t impose an immediate threat that I’ve encountered. Then again, I do lay down for a while, I have to stop my day and get my heart back to a normal-ish pace. 

I point this out because the amount of times I stop my life in a day to focus on a malfunction varies. So is that disability? Does it come with a number of how many times you stop your life in a day? Does disability change from day to day? The thing people don’t tell you about chronic illness is that it comes with a lot of labels. If you’re high functioning, people don’t understand that you’re sick. They can get frustrated or even mad when you’re put in a situation where your disability can’t be accommodated. If you’re not able to function at a high level, people call you lazy. They plaque you with derogatory names. The reality is, as much as people can sympathize, chronic illness goes much deeper. Functioning well comes from an inner battle that we choose to have everyday. Sometimes chronic illness is a losing battle. 

You can look at disability in different ways. I have been diagnosed with a “decline functional status.” In the medical community, I am disabled. I think if I labeled myself as anything else, I’d be setting myself up to fail. I don’t see being disabled as a bad thing. On a daily basis, I am high functioning but the reality is I need help. I get help from Crush but sometimes I need help from my family. 

I think using this term intimidates people. From my perception, people see it as labeling yourself as weak. I can’t change my health conditions. I follow my check list of daily remedies but that doesn’t change a lot for me. When I first got sick, I looked at asking for help as a bad thing. I was embarrassed and truthfully a bit ashamed. When you’re put in a situation where you NEED help and you can’t live without it, your perspective changes. For me, it changed slowly. I still have trouble asking for help. I’m afraid to go to my doctors about issues I’m having because I’m scared to be labeled a hypochondriac. These tendencies have come back to bite me more than once. For me, pushing away the term disability was like pushing away reality. My body doesn’t function the same and that’s okay. I will still have a fulfilling life. I will still be happy. I will still continue on and dream. 

What you label your health issues is not the problem. You may call it a disability or call yourself differently abled. The reality is, the perception of your health is the problem. Once I got Crush, it became easier to ask for help. I was asking Crush and not a person. Back when we could go out, I would be able to sit and rest when I needed to without feeling judged because Crush was with me. I’m sure people make judgements regardless of Crush but my perception is what changed. That is what matters. I don’t have an answer for the question “what is a disability?” Everyone has to find that out for themselves. But maybe with a lot of help from your doctors. 

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