What I Want You to Ask Me About My Illness (and What I Don’t)

5 Mar

“What do you take for that?”

It’s the most common question people ask me when I tell them I have fibromyalgia. It’s fascinating that this go-to is treatment-centric.

In fact, a lot of conversation around my condition, with people who don’t have a similar chronic illness, revolves around treatment.

“Look at this hemp patch for pain.”
“You should swim.”
“I saw a medicine for that on TV.”

SIDE NOTE: From some, treatment seems synonymous with solution (“Have you had your house checked for mold?”). I talk about this fixer behavior feeling dismissive, minimizing, detached, or even blaming in some of my speaking programs and in my book Splatvocate: Supporting People with Hidden Disabilities.

What it all sounds like to me, is,

“What do you do to become more normal?”

And then the rabbit hole of implications…

“Because you should be normal.”
“Because everyone should be normal.”
“Because you can’t be happy unless you’re normal.”
“Because it would be more convenient for me if you were normal.”

What I Would Like You to Ask

It’s a question few people have ever asked me. It is a path to awareness, education, empathy (NOT pity), and trust.

The question I want you to ask is:

“What’s it like?”

I feel such a warm and strong connection to someone when they ask this question. I feel valued. I feel believed. I feel they’ve set firm foot on my tricky little island to stand there with me.

I won’t say, “It’s terrible!” or give you a morose opinion (which I do have, to be honest). I’ll tell you a little about what it’s like. What follows is the long/complete answer; if we’re standing in line at Target, of course I’ll keep it shorter.

I’m tired all the time. I have no idea what it’s like to ever wake up feeling rested. There’s pain, but mine’s usually not too bad. It’s like the achy pain you get when you’ve got a really bad cold. I can be sensitive to touch. Please be gentle with handshakes, and if you like to talk with your hands, please keep them to yourself. Hugs are nice.
Sometimes my brain won’t work, like my IQ has suddenly dropped a couple dozen points. I might stutter or slur my speech or get words mixed up or just not be able to talk.
I’m sensitive to smells, but still can enjoy scented candles and flowers. Loud noises really bother me, like loud talking and loud television. Florescent lights bother me and can make me dizzy.
I also just get random dizzy spells, which feel like that wobbly moment when you just step off a fast elevator, except I’m stuck in that moment. I do walk into furniture.
My hands hurt and are weak and I drop things.
Eating a certain way can help me, so please don’t pressure me or guilt me about what I do or don’t eat.
It’s different every day, so what I can do one day I might not be able to do on another. Some days I can do pretty much whatever I want (in moderation) and other days it’s a struggle to get out of bed. Often, when I live like I’m “normal,” I will pay the price the next day or several days.

Neither you nor I have to be OK about my condition. We certainly don’t have to fix it. Life is messy. Yet, there are plenty of ways to live joy in this mess. I don’t want to apologize for being sick, nor do I want to add the work of making you feel better about what I have. Rather than being treatment focused, join me in understanding the condition itself. Rather than denying, join me in acceptance. Rather than fixing, join me in living.

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6 thoughts on “What I Want You to Ask Me About My Illness (and What I Don’t)

  1. Thank you so much for sharing this! I find my condition so difficult to articulate sometimes. This has majorly helped :)

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