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When I Was Confronted About Being Disabled

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Many people with invisible illness or an invisible disability have their own story to tell about people judging them. It can go from the most common phrase we hate to hear, “you don’t look sick”, to being accused of faking our illnesses to get a disability sticker. The general public does not understand invisible disabilities and I can’t expect them to, but they have no right to judge us for the things they can’t possibly understand.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

One of my many illnesses is Ehlers-Danlos syndrome, so I have lots of joint pain. Before this, I was told I had amplified musculoskeletal pain syndrome (AMPS ). My mom, my brother and I went to Walmart, and it was a high pain day so I was struggling. I felt uncomfortable using the motorized scooter there because I had never used it before. So I was already self-conscious about it, but I wanted to be able to shop with my mom.

My mom and my brother went to an aisle over while I looked around. Here comes this lady in a motorized scooter as well. So, I was like we are the same, we are kumbaya. She starts to pass by me, so I smile and wave. She stops her cart and says, “Do you really need that? Do you actually have a disability that requires you to use that?” I replied with,” I have amplified musculoskeletal pain syndrome…” and gave her an “are you kidding me” look, then yelled for my mom. My mom eventually caught up with her, asking why she thought she had the right to accuse me.

It turns out she thought I was a lazy kid who used it for fun. I understand that is a big issue, but that doesn’t mean people have the right to make assumptions. Is it really worth taking the chance of that teen or adult actually being disabled and ruining their trip to the store? I should hope not. I ended up crying, and today it still bothers me.

Someone in one of my support groups had this issue recently and I realized it needs to be talked about. If you are having this problem, you are not alone. It’s OK to upset and sad. I do get self-conscious about my mobility aids, but I also know I need them and they help me live my day-to-day life. I have a love-hate relationship with my wheelchair, walker, AFO braces, and immune system mask. I just try not to let the starers get to me, because they are not worth it.  We all have bad days when we get self-conscious, but let’s not let them win!

Getty image by Callum Redgrave-Close.

Originally published: July 16, 2018
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