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Why I Tell People What's 'Wrong' With Me

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I wrote a piece a few days about how I was going to put a “If you have any questions about why I’m using my disability parking permit, call my doctor,” card next to my permit, after being confronted by a woman who thought I wasn’t “disabled enough” to use it. While the response has been overwhelmingly positive, one comment stands out.

While I won’t type it out word for word, the crux of it was, “You shouldn’t use disabled parking, you should save it for those in wheelchairs.”

I politely pointed out that as I have family members who use wheelchairs, I understand the hassles they face, and I also pointed out that my family members in wheelchairs, once out of the car, are more capable of traveling distances than I am.

It was met with, “I don’t understand why some need to find the need to say, “Look, this is what’s wrong with me.”

I was thinking about it while I was driving to work. Specifically, when I went the long way rather than have to go over a speed hump that sets of my pelvic and back pain no matter how slowly I go over it.

I thought of it again as I smiled and told everyone I was “Great, thank you!” when they asked how I was, even though the truth was, “I’m not really sure I’m going to last another hour here, and I currently have a 7-centimeter tumor in my remaining ovary five months after I finished chemo for ovarian cancer!” (Whoops, there I go again, feeling the need to tell people what’s wrong with me!)

I thought of it again while I was planning out my day to ensure I can leave 45 minutes early for my afternoon shift so I can get non-disabled street parking close to my workplace, rather than have to take up the one and only disabled parking space.

And I have my answer.

I tell people what’s wrong with me because many simply refuse to accept that I have health issues unless I spell it out for them. I tell people because I’m passionate about raising awareness for invisible illnesses, because I hope one day we can speak openly about our illnesses without someone asking us why we feel the need to draw attention to ourselves like we’re some kind of attention seeker.

I tell people because hopefully it will give them an “Oh poop” moment, and make them realize that they have judged me before they have all the information. I tell people because I am now old enough and strong enough to talk about my illnesses without accepting the attached stigma, shame or feelings of inadequacy because I know for a fact there are people out there who have not yet found their voice.

I tell people about my illnesses because even in a community for disabled and chronically ill people and those that support them, someone questioned the legitimacy and severity of my disability.

Now. If you’ll excuse me, my myalgic encephalomyelitis, fibromyalgia, chronic asthma, chronic migraines, generalized anxiety disorder, severe endometriosis, ovarian cancer and I are going to go have a nap so I have the luxury of choosing not to use the disabled parking spot this afternoon.

Originally published: August 11, 2016
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