What NOT To Say To Someone With An “Invisible Illness”

Hey Crohnies and Lucky Coiners! 

I hope you’re all having a lovely weekend, I’m still recovering and taking it easy after surgery because it’s surprising how frail I feel right now, I’ve even somehow managed to catch a cold on top of everything… Typical! 

Anyway, one thing I’ve always noticed when I get unwell is people either don’t know what to say to me so don’t talk to me at all or talk away but can sometimes unknowingly be offensive, after having Crohns for the past 10 years I’m pretty used to it now but I’ve thought of some of the worst things that are said when I’ve been not well and how to combat those by changing your wording slightly…

“Oh right you’re not well AGAIN?” 

This is pretty sure to be the number 1 way to get an angry response. I know that I am personally very defensive when this question is brought up time after time. It makes us feel guilty for being sick, since it’s happened enough that you have noticed it and seem to be inconvenienced by our illness. Try saying instead, “I’m sorry to hear you’re unwell. It must be tough having a flare up.” – this is a much kinder way of acknowledging the illness while not making us feel guilty for having our illness/disease and also you don’t sound like an absolute tool for being so insensitive. 

*farts* “haha, oh it must have been (insert unwell person’s name here) who did that, definitely not me” 

Look, this one is plain mean, no one likes a dick and if you say this you’ll definitely come across as one. I can’t count the number of times someone has thought it’s been funny to blame their farts on me since I have a stoma and I can’t control their noises/farts. TRUST ME this is so embarrassing when it is actually me but I will admit it since what the hell have I got to be ashamed about but don’t make me and everyone else you’re around uncomfortable at your shite joke (aha literally shite). Instead say, “pardon me” or “oooops sorry, better out than in!”. 

“Do you mean we have to change our plans just because YOU’RE being difficult”

It’s not called being difficult, it’s called having an uncontrollable disability that means maybe we can’t eat in certain places/ do certain strenuous activities/ go out at all and have to stay in but in saying this you’re not only making us feel guilty, you’re also showing yourself in a bad light as someone who is too self obsessed to be considerate and if you ever need some plans changed you’ll look like the biggest hypocrite. Some of my best days have happened when plans have been cancelled or changed to help accommodate myself or others who have been unable to do the originally planned activity and has led to some of the best meals in different restaurants, movie nights in instead of trips to the cinema and even watching everyone else do activities like tobogganing when I wasn’t feeling up to it. Instead say, “cool we’re staying in for a movie? I’ll bring the popcorn!” 

“Don’t lie, you’ve been on a diet haven’t you? You’re looking very skinny” OR “someone was good to themselves at Christmas and put on some pounds!”

If we happen to mention that we’re annoyed our clothes don’t fit due to weight loss or weight gain we just want a sympathetic ear, not some harsh comment. Fat/skinny shaming is not okay full stop. Just don’t even go there. Instead say, “that must suck, but if there’s ever an excuse to go shopping now is it! Let’s go!” 

*Deafening silence*

Don’t ignore us, we’ve been through a lot and the last thing we need is to feel ostracised. Be our friend and please talk about how Johnny didn’t text you back or that new amazing dress you bought. Sometimes we just want to deal with the everyday struggles of people instead of the daily huge task of dealing with our illness. Give us a chance to feel like one of the girls/guys for a few hours, God knows we need it and if you do try to initiate a conversation but we’re too tired or unwell to reply please don’t get the hump about it, give us a few days/ a week before you try again. We’ll appreciate it. Instead say, ANYTHING. The more trivial the better. 

“But you don’t look sick…”

Well you will probably get the reply of, “and you don’t look like a doctor so maybe we should just leave it at that”. The fact is most people with illnesses or disabilities don’t show any outward signs of being unwell at first glance and you saying they don’t look sick isn’t a compliment but rather feels like a dig for not “looking unwell enough”. Trust me if you ask any of our team of doctors/ nurses/ psychologists/ surgeons/GP’s then they’ll be the first people to tell you otherwise because they’re qualified to do so, unlike you. Instead say, “I know you’re really not well but you look fantastic at the moment and I’d never have guessed you have your illness.” 

I for one know that your friend will appreciate this so much so long  as you just have a little bit of consideration for them. I’m not saying this because any of these have happened to me recently but since I got disagnosed I’ve had each one multiple times and I thought this little guide of 5 simple ways to be a good friend would be handy! 

Hope you’re having a fab Monday! 

Jen x 

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