Community//

My Disability/Chronic Illness Doesn’t Have to Fit Your Stereotype or Agenda to be Real

Stop trying to make medical conditions fit into a trendy hashtag!

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mirrorlake at mentasta, DMShepard.com

Stop trying to make medical conditions fit into a trendy hashtag!

While it’s awesome to see a raised awareness and inclusiveness of people with disabilities and unique conditions, I’m seeing a very disturbing trend. People with some of these conditions are being told they don’t belong. They don’t “look enough” of the following to deserve support:

  • Disabled
  • Neurodiverse
  • Sick
  • Handicapped

Often by the very groups that claim to want to support them. People are being stereotyped based on preconceived ideas of what these things should look like.

This breaks my heart, especially as someone with an invisible illness like Multiple Sclerosis. People have stereotypes of what they think someone with MS should act/look like. I’ve even had well-meaning (and sometimes not so well-meaning) people say things like the following:

  • You look so good
  • Aren’t people with MS in a wheelchair?
  • Why do YOU have a handicapped sticker, you don’t look handicapped
  • And many more…

It’s one of the reasons I started blogging about my experiences with MS. I wanted others to know they are not alone. They are not hopeless, helpless or useless. They are worthy. They belong.

People can’t see that I am going blind in my right eye. I worked for years hiding the fact that the entire right side of my body is numb and at times can’t function. I worry that when I speak in public everyone will notice the way I slur my words. My balance and coordination is so bad that I’ve sprained my neck and dislocated both shoulders more than once. And don’t even get me started on the bladder issues. I’ve had to wear adult diapers since I was 22. Hard to find sexy undies to accommodate that.

Denial and Pride

And there’s so many other things that go along with it. But I hid it for the longest time. Part of it was denial. I wanted to pretend I was normal. Just like everyone else. If they couldn’t see it, then everything would be okay. A lot of it was pride. I didn’t want pity. I could do it all.

My health paid a price for both.

I grind my teeth now when I see people being told that their experience with their disability isn’t real or good enough.

“You can’t belong to our group or use this hashtag because you don’t meet our preconceived stereotypes.”

SERIOUSLY? Do you have superpowers?

Who died and made you the diversity guru? Do you have x-ray vision? Can you see into someone’s body or brain and diagnose invisible conditions? If you can, then why aren’t you richer than Elon Musk or Bill Gates?

I wouldn’t want to belong to a club that would have me as a member

Groucho Marx

I have news for you. I don’t need you either. My medical condition was real long before you pretended to care, and it will be real when you’re gone. It’s not a trend, and agenda, a hashtag, or something to help you look good. It’s my reality that I live with every day. And many others too.

And for those of you struggling. You belong. You are worthy. Don’t self-reject or let anyone tell you otherwise. If they do, send them my way.

About the Author

I pulled up anchor to escape a small town in the Mojave Desert and joined the Navy’s Nuclear Power Program at 18. A diagnosis of MS derailed my dreams of becoming a super-spy. Making limoncello from my lemons, I became an Electrical Engineer instead. Through many twists and turns made my way north to Alaska. I write novels about women in STEM who save the day, and the hot guys who sometimes lend them a hand. I blog about my adventures as a woman in STEM and my struggles with MS. My husband and I are currently working hard to turn 31 acres of Alaska wilderness into an off-grid retreat. My first self-published novella, The Dark Land, a blend of horror, romance and mythical Alaska creatures, is available on Amazon.

Our camping trip into Wrangell-St. Elias National Park as part of my writing research for my Alaska novels
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