What Not To Say To Someone With An Invisible Illness

Sometimes, I’d like people to read my mind. Other times, I think I must assume people can, then get upset or frustrated when they simply ‘don’t get it’. Not many people know the symptoms I have, the health issues I’ve got, about the two operations I had last year, or the stoma surgery I’ve recently had.

The problem is, even when someone knows you’re struggling and perhaps they know what it is you’re struggling with, they can still say the wrong thing. It’s easy to get upset or annoyed, but remember: no one can fully understand the condition or problem unless they’ve experienced it for themselves, and no one can understand your unique personal experience other than yourself.

We’ve probably all heard things along these lines before…

  • Chin up, it’ll get better.
  • You don’t look sick.
  • You look really well!
  • Have you tried xyz?
  • You’re just being lazy.
  • When dealing with insomnia : Yeah, I didn’t get much sleep either, only about 7 hours.
  • When dealing with chronic fatigue and exhaustion : You better get an early night / I’m tired too / you should join the gym to get more energy.
  • Are you feeling better yet?

Perhaps things are said from ignorance and lack of knowledge, or perhaps it’s because that person feels something needs to be said but they’re at a loss for what that should be. Maybe they don’t realise the impact those words will have. The key is to raise some awareness of invisible illness, be strong enough to brush off ignorant comments, and accept that others may not fully understand what it’s like to live in your body, just as you can’t fully understand what it’s like to live in theirs.


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