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Being Subjected to Judgment Because of My Invisible Illness

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The Dysautonomia Support Network, in honor of EDS/HSD Awareness Month, is doing a daily my awareness/my story challenge. When I was adding my little story to Facebook for the challenge, I realized that this one hit a nerve pretty hard.

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

Day five: Describe how invisible illnesses EDS/HSD subject you to judgment from strangers, friends and family.

This is one I could have done a video of because it’s one of those that hurts your heart. I’d just be a blubbering mess though. When you constantly say you’re in pain, people stop listening. They get tired of it. Then they judge you for it.

In high school, my teachers judged me. They didn’t believe that I was very ill. Really in pain. Even when the principal had to call 911 because I collapsed in the middle of the hall and had be taken to the hospital, they still didn’t believe me. I clearly remembered two teachers who told me I wouldn’t make anything out of my life because of my “so-called illness.”

Friends and family get tired of canceled plans. They may not even realize they are judging me for it. I can understand that they get sick of making plans and then last minute (very last minute) things have to change. It’s one of the ways I’ve lost so many friends. Lost so many connections.

Work. Work is the hardest. Your coworkers judge you for being out even when you work from home, plus doing an extra four hours a day to make sure no one has to cover your job. Your managers, especially those micro-managers, get tired and stop believing you’re in pain. They stop believing you’re at doctor appointments, physical therapy, etc. It gets worse when you have that one good day and you’re able to dress to impress, wear a full face of make-up and do your hair – they don’t understand why you’re not “on the ball every day,” though they have seen you go from a stellar employee to trying to survive each day. They go from friend to manager to enemy. They don’t understand how hard it is to have to physically call them when you’re on your way to the ER at 4:00 a.m. Then when you do – and you’re sobbing or barely able to bring together a coherent sentence – they think you’re acting “childish” or “overly dramatic.” An email won’t do. A text doesn’t satisfy their needs anymore. They manage your FMLA down to the minute as if you’re trying to steal time. They decide that you are faking it or become ridiculously suspicious when you can do some work at 3:00 a.m. because you are unable to sleep and might as well try to cover your job.

And I haven’t even talked about the judgment you get from others if you happen to use your disabled parking permit on bad days. Some days it takes everything to just walk from your parking spot to the front door. You’re young and maybe not in a wheelchair – you don’t “look sick.” Luckily I have not had any nasty conversations or received notes on my car but the fear is there every time I use it.

Wow. I guess this one meant a lot to me. The judgment hurts. Mainly because I can’t help being sick. They may understand, but it still hurts them since I cancelled.

We have to remember others’ feelings too while still taking care of ourselves. It’s a delicate balance.

Thinkstock photo via Wavebreakmedia.

Originally published: May 10, 2017
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