The Mighty Logo

13 Questions We Want You to Ask About Our Chronic Illnesses

The most helpful emails in health
Browse our free newsletters

When I first tell people about my chronic illness, I brace myself for that cringy question:

“What do you take for that?”

It’s the most common thing people ask when I tell them I have fibromyalgia. It’s fascinating and troubling 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.”

What it all sounds like to me is:

“What do you do to become more normal?”

And then that rabbit hole of implications…

“Because you should be normal.”

“Because everyone should be normal.”

“Because you can’t be happy unless you’re normal.”

And worst of all:

“Because it would be more convenient for me if you were normal.”

What We Would Like You to Ask

I do want you to ask me questions about my illness, though. Many of us do, whether for awareness, assistance or just to take a break from hiding it.

I reached out to other Mighties to see what questions they wish people would ask, and here are some of their responses:

“How are you dealing with this emotionally?”

“Do you want to talk about it?”

“What do people say about it that aggravates you?”

“What can I do to support you on your bad days?”

“What do you find most challenging?”

“Can you tell me more about your condition so I can try to understand?”

“What can I do to make it easier for you?”

“What is the pain like?”

“How does ableism affect you?”

“What makes you feel included?”

“How can I educate myself and spread awareness about your illness?”

The Love/Hate Question

Many responses I got were that people would like you to ask, “What can I do?” “How can I help?” or something similar. Yet several other responses were very strongly against asking these broad questions. Why is that? I have an article on my blog giving my own perspective on this dichotomy.

My Own Favorite

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 people 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 a firm foot on my tricky little island to stand there with me.

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.

Check out my system for communicating about chronic illness here: The System I Developed to Explain the Ever-Changing Severity of My Symptoms

Getty image by Ponomariova Maria.

Originally published: April 28, 2021
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home