If you’ve been reading my blog for a while, you know I’ve been asking questions of the spoonie (chronic illness) community on Instagram. I feel like asking these questions and sharing the answers anonymously on a more public forum gives those who do not live with chronic illness a window into the world of those who do.
So far, this approach has been quite successful in spreading awareness and sparking important conversations.
I recently asked the community to describe the most discriminating or insulting thing they’ve ever experienced as a person with a chronic illness/disability.
These are their responses (edited for content and clarity).
# 1 – You’re Fired!
“I was once fired from a job after being in hospital for two weeks, then taking the next four weeks off to recover from surgery and an infection that nearly killed me. When I went back to work, they told me they were letting me go because I had a “conflict with someone in the office”. I’ve never had any conflict with anyone in any workplace!”
# 2 – Repent, My Child!
“A customer prayed over me in my store and told me to apologize to Jesus so he’d let me walk.”
# 3 – Have a Free Turkey, You Faker!
“When I was in the grocery store, an acquaintance accused me of faking, and an older woman overheard her. In response, the older woman gave me an expired coupon for a free turkey because I was in a wheelchair. Then, she had the nerve to brag about her “good deed” to my mother. My mother wasn’t having it. She yelled loud enough for everybody to hear, ‘Thanks for the expired coupon!’”
# 4 – You’re Trying to Cost My Company Money!
“I got fired from every job I had for being sick. The worst was with my second-to-last employer who accused me of lying and pretending to be sick during my 6-month contract and staying sick so that it would cost HIM money after the 6-month contract was ended.
At this time, I had gotten so ill, I could barely walk, let alone stand on my feet for eight hours in a hot, airless store full of perfumes. (I had adored working with makeup and perfumes prior.) I was into my 5th month, and my boss tried every dirty trick in the book to break me, including trying to get “evidence of my faking it” on camera.
Even when I called out knowing I was far too ill to work, he kept calling me in with threats that he would send his lawyer a statement saying I was refusing to work. Since I didn’t exactly know Dutch law to the tee, I dragged myself down there every time, but I found out later that he had no case. It was too late, though. The emotional damage had already been done.
I was smart and strong enough to stay calm and collected on the outside, but inside, I was going insane. I was never the same after this experience. I don’t leave the house anymore because I’m afraid my trauma will result in a psychotic episode.”
# 5 – If I Can Do It, Anyone Can!
“A woman was talking behind my back about how I couldn’t be as sick as she once was, and that I should be forcing myself to work full-time no matter what. She then gave examples of her symptoms and said if she could work, then I should certainly be able to! It was a super prideful thing to say, and it hurt me very much. I’m still trying to get over that comment.”
One of the worst comments/questions I’ve seen is in someone’s Instagram story where the (presumably) healthy person legitimately asked why the chronically ill person was even bothering to seek medical care since their condition could not be cured. So, basically, the person suggested the spoonie should just give up and die?!
Have you experienced discrimination due to your disability? Share your story in the comments below to help people who struggle like you do know they are not alone.