To Those Who Wonder Why I Don't Talk About My Illnesses
“What’s it like?” “Why do you need a walking stick?” “What’s wrong with you?”
These questions get asked every single day. Whether it be employers, friends or complete strangers in the street. Everyone wants to know.
Everyone wants to know why the 22-year-old who, if he weren’t hunched over his walking cane, would seem perfectly healthy.
Now, there’s a long a convoluted list of reasons why I limp around the kitchen at work, but it’s not something I like to bring up in casual conversation.
But it gets brought up. And I’ve had to learn to deal with that.
What I shouldn’t have to put up with (and neither should anyone else) is being looked down upon, looked upon as a burden, or worse yet, pitied.
Don’t be nice to me or care for me because my legs don’t work. Be nice to me or care for me because I’m human.
I’ve had a long list of diagnoses and misdiagnoses, from lupus to bone cancer, but finally, the unanimous decision became fibromyalgia, hypermobility syndrome and chronic fatigue syndrome. Simply put, my body hates me.
And it’s bad enough having doctors question your physical and psychological health without people who have never had medical training calling you a liar.
I’ve been called a fake, a con man looking for disability benefits.
Part of me wishes that were true.
I wish waking up every morning in agony, relocating bones, being bedridden for days (sometimes weeks on end) and the consequential depression were all pretend, a figment of my imagination.
I wish it was, but it isn’t.
I get up, I go to work and I struggle through the day.
“But you don’t talk about it?” — Why would I?
Why would I want to bring it all up? Why would I want to bum everyone else around me out, just because my health sucks?
Keeping quiet and smiling doesn’t mean I’m not in pain. When I can just about walk, it doesn’t mean the other days I’m faking. When I’m not talking about it, it doesn’t mean it isn’t there.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.