What NOT to say to someone with a chronic illness

Blame or judgment

Some people think chronic conditions are a matter of lifestyle problems and say stuff like

• “Maybe you’d feel better if you exercised more/didn’t sit in your room all the time.”
• “If you ate better, maybe this wouldn’t have happened.”
• “You need to think more positively.”
• “Are you sure you’re doing everything right?”

Which I find ironic because this shame-based attitude contributes to childhood trauma, which the body holds onto. Childhood trauma is linked to chronic illnesses.

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.

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.

Gaslighting or disbelief

Sounds like

• “Were you actually diagnosed? When? By a real doctor?”
• “Are you sure you’re not just addicted to your meds, like you think you need them since you rely on them now?”
• “Have you tried [doing thing you can’t do] instead of enabling your disability?”
• “You could do it last time. Why can’t you do it now?”
• “Don’t you think you’re handicapping yourself?”
• “I think you’re exaggerating/taking advantage.”
• “Stop being dramatic.”
• “You’re fine. You’re complaining too much.”

The people seeking proof of your condition are usually prejudice jerks thinking everyone takes advantage of being disabled because they’re keen to.

Or they have internalized ableism while being disabled themselves and think all they need to do is push through because otherwise, they’re being a big baby.

As if those of us who’ve accepted our chronic conditions and disabilities haven’t also tried pushing through. Hence all the grieving.

Insensitive comparisons

Being autistic, I totally understand mirror empathy.

But I draw the line when someone downplays my experience with the fallacy that it could be worse, like that’s not a superiority complex in disguise.

I’m talking about these comments:

• “At least it’s not cancer.”
• “Well, I had a [enter medical emergency here].”
• “I had a headache that lasted all day — you know how that feels, right?”
• “Oh, that’s just like [insert something minor they experienced].”

Minimizing or dismissive comments

These include:

• “You don’t look sick.”
• “It can’t be that bad.”
• “Everyone gets tired sometimes.”
• “You just need to push through it.”
• “It’s all in your head.”
• “Other people have it worse.”
• “You’re overreacting.”
• “You should try [insert random remedy].”

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.

Misunderstanding or intrusive curiosity

Sounds like

• “What exactly do you have?”
• “How do you take care of yourself?
• “Why do you need [insert mobility aid/accommodation]?”
• “Can you even work/do normal things?”
• “Why can’t you just take medicine for it?”
• “If you’re on medication for it, that should be good enough, right?”

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.

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, and blogging is the career I can have where I retain autonomy over my work.

Well-intentioned, but exhausting 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.

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What might you add to this list?