January 14, 2021
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If you don’t have anything appropriate to say, don’t say anything at all.
If you’ve had multiple sclerosis (MS) for more than a minute, chances are you’ve already heard some version of a few of the outrageous comments on this list.
Chronic illness is poorly understood. While it can be exhausting to respond to outlandish comments again and again, I can hardly blame most for not always knowing the right thing to say.
Our ideas about disability have been shaped by decades of stereotyped storytelling. The good news is that authentic chronic illness stories are starting to be told, and the more we tell them, the more we’ll all start to understand disability as just another part of the human experience.
In the meantime, here are 10 of the silliest things that have been said to me as someone with a chronic illness.
In an attempt to reassure me, a close friend said this after doctors told me there was a chance I had MS.
She was trying to be cheeky and maybe even funny, but 20 years later, her words still ring in my ears. The truth is that she probably couldn’t think of any young people who looked like us with a chronic illness like MS, and that’s the failure of media to include and represent this demographic.
MS often begins as a young person’s disease, most commonly diagnosed in women ages 20 to 40. Lots of pretty people get MS.
This was said by someone close to me, between my first symptoms and my actual diagnosis, in an attempt to reassure me that what the doctors suspected couldn’t possibly be true.
The reality is that bad things do happen to good people. Chronic illness isn’t God’s punishment, and MS isn’t my fault.
While we’re on the topic of God’s plan, as I was sitting on my rollator outside a mall waiting for my ride one day, a stranger asked if she could pray for me.
When I told the woman I was fine, she kept insisting, telling me that God wants me to be better. The idea that I could be cured by her intercession suggests that God’s got it out for me if he doesn’t fix me.
Not to mention, I was just going about my day. Being pitied by a stranger was not the kind of energy I was interested in.
The statement “God doesn’t give us more than we can handle” is commonly meant to be encouraging, but given the struggles with mental health and addiction that the chronic illness community faces, I don’t believe that’s always true.
Religion can be a valuable tool for coping with the realities of chronic illness, but it’s important to remember that faith is extremely personal.
This comment came from a stranger in an elevator, and it was asked in a tone heavy with pity.
Again, I was just living my life, wondering if it was too early for peppermint mocha or if we were technically still in pumpkin spice season. Suddenly I was rudely reminded that the first impression many people have of me is not the gal-about-town version I have of myself — it’s of some “tragic” sick girl.
It takes real energy to remind myself of who I am when others are regularly projecting a sad narrative onto my life.
I heard this one a lot in the lead up to my wedding, and I was lucky, but not for the reason that was implied by this comment.
The subtext was that a good man was marrying me “even though” I had MS. The truth is we were both fortunate to have found each other, but not one person felt they needed to tell my husband how lucky he was.
As a mobility aid user I hear this a lot. While we’re more accustomed to seeing elderly people using mobility aids, disability can affect any of us at any age.
Aside from the fact that this comment doesn’t make sense, it can be problematic when it’s accompanied by a disbelief that someone legitimately requires a cane, a rollator, or a wheelchair.
A positive attitude is important, but so is grieving what you’re going through, and this kind of statement invalidates an individual’s experience.
You don’t always have to be grateful that’s it’s not worse. What’s more, how are people living with the condition you’ve decided is worse supposed to feel?
Using someone else’s suffering to feel better about your own life is the definition of what Stella Young coined “inspiration porn.”
I was at a Broadway show, sitting in my rollator/convertible transport chair that really is a nice seat.
This comment wouldn’t have made it to this list, except the person who said it proceeded to rub my back and pat me on the head, somehow forgetting that I was an adult woman she didn’t know.
This wasn’t said to me, this was asked about me at airport security.
This offense is a big deal, because ignoring a wheelchair-user and talking instead to their companion is infantilizing and demoralizing. It’s especially outrageous because it happens almost every time I fly.
Airport security sees and interacts with wheelchair-users all day, every day. They should know better, and they need to stop doing this.
It’s stunning to me how often strangers feel entitled to know such personal information as someone’s medical history. Imagine if you were regularly asked by someone you didn’t know to tell them about one of the worst things you’ve been through.
People with MS and other chronic illnesses hear outrageous comments like these all the time. We understand that most people mean well, and we spend considerable energy enduring our own discomfort in order to protect the feelings of nosy strangers or even friends and family.
I applaud those who, when these microaggressions occur, take the opportunity to educate others about what it’s like to actually live with MS. But it shouldn’t be incumbent upon the disability community to teach the world some manners.
To the curious strangers who really do want to help: Instead of giving unsolicited advice or asking personal questions, try to listen, build a ramp, donate to research, hire someone with a disability, follow a patient advocate on social media, or support television and film projects that tell authentic stories.
And if you don’t have anything appropriate to say, don’t say anything at all.
Article originally appeared on January 14, 2021 on Bezzy’s sister site, Healthline. Last fact checked on January 14, 2021.
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