What NOT to say to someone with a chronic illness

“Can you even work/do normal things?”

Everyone is different, and it’s not up to you to decide.

No one is entitled to knowing anything.

People who make assumptions about others without knowing the full context don’t eat enough humble pie.

My favorite assumption is when someone thinks those with chronic illnesses stay home and relax all day, or don’t work.

Chronic illness flare-ups aren’t at-home spa days. They’re staying in bed because getting up makes you a fall risk. Or struggling to keep food down because of stomach issues.

Or fainting after eating a bowl of pasta, ’cause carbs.

And having the level of pain normal people would go to the emergency room for, but not going because the ER sends chronic pain patients home even if it’s the worst pain they’ve ever had.

It’s lots of medical bills and handfuls of doctors making sure you are in as tiptop shape as possible for someone in your condition.

Some days, I’m in so much pain I’d cry if it didn’t trigger costochondritis.

Not every disabled person has access to benefits, because too many people think those who need it most are gaming the system.

Also, you have to relinquish agency and autonomy over yourself and life when that happens. The government is not kind towards disabled people.

I’m building up my blog with my bare hands as an online business, because I know my reality: I won’t survive retail for another year unless I have a more dynamic role, and blogging is the career I can have where I retain autonomy over my work.

“Don’t you think you’re taking advantage of the system?”

…what system?

Not everyone with chronic illness is on disability. I sure as hell am not. Do you know how they treat bank accounts of disabled people? I can’t with that kind of uncertainty. I need predictability to feel safe and secure.

I think the people who make assumptions or ask questions about chronically ill and/or disabled people taking advantage of the system are projecting.

“Everyone exaggerates.”

I don’t.

By the time I vocalize my symptoms, I’m in too deep.

I’m autistic. I learned quite young how non-autistic people exaggerate instead of telling the truth. This is part of why it took me so long to access doctors who took me seriously.

Because I masked and minimized my symptoms. I thought everyone had severe foot pain after walking and standing all day, to the point where they struggled to pick up their feet. I thought everyone felt like they were on the verge of collapse.

Before diagnoses, I thought I was just really bad at coping.

“Everyone gets tired sometimes.”

Not everyone experiences chronic fatigue.

Not everyone is floored by chronically inadequate sodium intake.

Not everyone gets so tired they end up on a quarter-long leave of absence from work due to an undiagnosed — thus untreated — multi-chronic illness flare-up.

“Have you tried [doing thing you can’t do] instead of enabling your disability?”

I love this one, ’cause the recommendation is almost always walking more — like around the neighborhood block.

And I can’t do it because I could end up stranded on the sidewalk or fainting and injuring myself.

But if I say this, I’m told I’m making up excuses instead of identifying and mitigating risk.

And if I bite back with anything other than “you’re totally right”, then I am “handicapping” myself and “finding reasons to do nothing”.

“I had a headache that lasted all day — you know how that feels, right?”

Not if that was your only symptom…

“Nobody actually gets sick that much.”

🙋‍♀️ I do.

Contrary to your lack of double empathy, people do get sick frequently. Immune systems aren’t all built the same.

I have dysautonomia, plus other conditions that either get on well or fight each other. One condition’s flare may develop into another one.

When I caught the flu, it dehydrated me, I couldn’t tolerate food, and then I was in a lot of pain. This shit stacks.

“Oh, that’s just like [insert something minor they experienced].”

😐😒

“This is your fault.” (& other blame/judgments)

Before my 10s sinus pause in hospital, a grandmother told me my “naughty language” didn’t help my health.

In response to me asking for family medical history prior to getting a lumbar puncture, in case there was something that would prevent me from getting the procedure — I’d looked it up after saying yes to my neurosurgeon’s suggestion for it and decided a myelogram was not for me after all.

I wanted an out; instead, I got a 10s sinus pause that moved me to the top of the list for medical trauma by the sadists in radiology. I couldn’t sleep in February because they told me I couldn’t say “no” or “stop” after they started (lies).

Shame-based attitudes contribute to trauma, which the body holds onto; chronic illness is linked to trauma.

Eating well can still lead to diabetes, especially if you’re genetically predisposed.

Chronic illness flare-ups happen even when someone like me eats primarily lean meats and plenty of veggies in their meals, with moderate sugar intake. Actually, that’s the catalyst to my end-of-year flare: accidentally removing most of the sodium from my diet. 🙃🙊

You can live a highly active lifestyle and still experience chronic pain — if anything, high-impact activities are more likely to contribute to chronic pain than low-impact ones.

Unsolicited advice

People who jump to providing unsolicited tips on managing your condition claim to have good intentions when confronted about crossing a boundary.

Probing them beyond these intentions surfaces the truth: They’re uncomfortable with disability/other people struggling and need to fix it.

I can be okay with my life as it is right now, know that I need tools for learning to cope with a new baseline of disability and chronic pain, or even be grieving my own chronic conditions and disabilities.

That is my load to deal with, not a plate for someone else to struggle consuming. Their discomfort is not my responsibility.

It looks like:

• “Have you tried yoga/a diet change/meditation?”
• “You don’t need medicine. You need exercise!”
• “My friend/relative had it and they got better. Maybe you will, too.”
• “I tried [fringe medicine/diet not backed by science/snake oil] and feel so much better. I think you should look into it.”

I don’t need people who don’t know how to accept me as I am without needing to offer tips to make me more palatable for them.

If someone is not okay with me the way I am right now, then why are they pretending to be with the hopes I’ll try one of their recs?

Genuinely, no thank you.

“Well, I had a [enter medical emergency here].”

Okay? It’s not a competition.

“When were you diagnosed?”

This question is OK when discussing with other chronically ill peeps or people who are genuinely curious.

But asking someone with a chronic illness when you don’t have one yourself, and you don’t have a genuinely close relationship with them, is not.

I’ve learned the hard way people asking when I was diagnosed are usually asking out of disbelief, to find holes in my literal life experience because they lack double empathy — or possibly any empathy at all.

“You could do it last time. Why can’t you do it now?”

Because of something called dynamic disabilities with fluctuating needs.

Because energy and pacing don’t mean full capability constantly.

Even people who aren’t chronically ill have varying capacities depending on their energy levels and moods, but their pacing isn’t pathologized. Why?

“You don’t even LOOK sick.”

I’m chronically ill, not chronically ugly.

“You just need to push through it.”

🤣 Tell that to my orthostatic intolerance.

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The “little”, passive-aggressive comments build up.

One day, someone asks you why you’re treating them coldly “out of nowhere”.

I used to hide this version of me, then realized how much of myself I sacrificed a year ago because you know what?

My brain fog surfaced and caused interpersonal relationships with someone who had zero compassion for me anyways, as I’d witnessed her only having performatively.

And she confirmed for me what I knew true all along: she lacked empathy for those in her personal life affected by what she publicly advocated for.