Teghan Beaudette is a journalist and writer based in Toronto.
Though decades of pop culture would have you believe that living with a disability is quite inspiring, it’s not all triumphant montages set to swelling music.
I’ve had severe Crohn’s Disease since I was 14 years old – and for me, it’s meant a lifetime of medications, sporadic hospital stays, many surgeries and periods of being completely disabled. Once, a doctor enthusiastically described my disease to a student doctor as “active all the way from her esophagus to her anus!”
There are a litany of awful things you have to endure when you spend your life quite ill, but one I’ll never get used to is the never-ending onslaught of unsolicited advice you get from strangers and loved ones about how to fix your broken body.
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A neighbour once told me that someone he knew cured their stomach issues with a juice cleanse in a foreign country. Many of these solutions are often found in a foreign country. You aren’t getting any better from some run-of-the-mill juice cleanse in your hometown, but take it abroad, and then you’ll see! That $50,000 a year for medication will seem real silly on the plane ride back.
On one particularly galling occasion, a close friend once suggested that I talk about the illness as separate from myself (not my Crohn’s but the Crohn’s). This could lead to a cure, surely.
Back when I was in my early 20s, I was eating lunch at my desk and my supervisor asked me, mid-bite, “Can you eat that?”
Based on what she was seeing, I definitely possessed the ability. I was so good at eating cheeseburgers, in fact, that my mouth was packed with food, so all I did was nod. (People always ask me this when I am actively eating the thing they are “curious” about.)
The subtext here, of course, was: “Maybe you shouldn’t? Maybe you’d be healthy if you didn’t.”
Even my family, who has seen me at my worst – slowly wasting away to 90-something pounds, with a bloated face from months of steroids – occasionally can’t help themselves.
“You don’t want to be on those medications forever,” they’ve pointed out, as if there’s another path, outside of the life-saving medication, that simply involves some type of self-betterment.
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Everyone I know with a significant illness or disability gets this kind of stuff. It’s a never-ending tide of advice from every angle, advice they never once asked for. While writing this I texted my aunt, who uses a wheelchair, asking what the funniest unsolicited advice she had ever gotten was.
She texted back: “Do you mean something like, ‘If you believed in God, you would be able to walk?’”
I don’t really argue when people share their thoughts on what might fix me, and I suspect my aunt doesn’t bother either. People are just trying to help. And maybe going somewhere else and drinking juice or choosing my words more carefully would yield some kind of great result: truthfully, I haven’t really tried. But based on what my doctors have said, these things probably aren’t the best treatment plan.
And there’s a reason for that: My illness is really, really serious.
Crohn’s disease is a severe autoimmune disease that causes inflammation and damage to the gastrointestinal tract. It makes it hard for your body to digest food, get nutrition or process waste (poop! We’re fine with saying poop here!). The exact cause isn’t known, and there is no cure.
To give you a rough idea, about one in 140 Canadians live with Crohn’s or colitis, and that number is rising rapidly.
I take powerful immunosuppressants through a weekly needle and I have a host of other secondary conditions as a result of my illness. The disease impacts every part of my life, and I am extremely grateful for periods of remission and reprieve that I achieve through high doses of a bio-immune modifier and lifestyle management. I’ve made major, difficult changes to the structure of my life on doctors’ advice. And I actually think I’m pretty lucky in the pantheon of things that can happen to you when you have severe inflammatory bowel disease. My fistulas were repairable, and I don’t have an ostomy bag. Nor have I developed colon or colorectal cancer. My father, who also has Crohn’s, has not been so lucky.
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The vulnerable and unfunny truth about my illness is that it has always made me feel very alone. It’s embarrassing. No one else is in my body with me, and I think an immutable truth about chronic illness or disability of any kind is that it’s really isolating.
No one can feel my frustration at vague answers from doctors or long waits for appointments, the many ER visits, the continual shock that I’ve ended up back in a hospital bed with an IV in my arm. It’s just me – trying to be brave, or not, depending on the visit.
Sometimes it’s simply enduring the yammering of some jag-off who thinks he knows how to fix your body better than all the doctors and specialists on Earth.
So that’s why I don’t have advice for other people who are chronically ill or disabled. Because they don’t need it. They’ve been receiving it their entire lives.
I do have advice for people who have friends or loved ones who are chronically ill or disabled: try not to fix them. Listen more.
For me personally, the instinct to fix the problem often means I’m not listening or learning or making a space where someone can share their experiences or talk openly and honestly about what’s happening with them.
It’s not always easy. Sometimes I really, really want to compare and contrast someone’s experience with something I know. But I try to give myself permission to just hang out with someone, and not try to cure them.