Having a chronic illness can be a bit of a minefield in itself. I’ve been thinking a lot about things that people say that isn’t helpful and what could be said instead.
A lot of the time people don’t intend to hurt someone’s feelings when they say these things but when you’re already fighting with your body 24/7 the words of someone else can make it that bit more difficult.
So, I thought I’d write a handy guide from my perspective about things not to say to a chronically ill person and what you might be able to say instead.
“But you look healthy!”
First of all, thank you. Second of all, ‘looking’ healthy can take a lot of effort. I have showered, sorted my hair and maybe even put on some make up most of which makes me tired. There are many invisible illnesses, just because you can’t see it doesn’t mean it’s not there.
Instead, you can comment on how great someone looks without mentioning the illness – everyone loves a boost!
“You should exercise more, that’ll help“
Believe me I would love to be able to exercise every week without fail. Before my accident I was horse riding at least once a week and probably in the best shape I’ve been in as an adult.
The fact of the matter is I can’t do that anymore. I have to weigh up what I’m doing that week (Do I have any big deadlines? Do I need to go somewhere for work or with friends?) with the kind of exercise.
Currently I’m trying to do something every week but when every part of me hurts like I have the flu simply walking around my flat can be pretty painful. That said, I do try and get light exercise in no matter what.
Instead, why not ask them what activities they enjoy, if they’ve found anything that helps them and offer to go with. Some of my friends are excellent at this – we might go for a light work out together and I’ll just take a book so they can carry on if it gets too much!
“Have you tried going to bed earlier?“
Really Susan? I hadn’t thought about going to bed earlier to be less tired! Can you detect the sarcasm? Fatigue is a bit part of some chronic illnesses. When I’m in a flare I could sleep for 12 hours and still wake up feeling exhausted. Even when I’m not in flare if I have a busy weekend socialising I probably won’t be back to my version of normal for about a week.
Instead, maybe just don’t question their habits. It’s a bit of a dick move.
“How come you can go to work/go out but you can’t come to my thing?”
I work because I need money to live. If I’m low on energy that’s my priority. Next question Janet.
Instead, be understanding let them know that it can’t be east to try and manage expectations and maybe recommend doing something together that’s less energy consuming.
“You’re so boring”
Here’s the thing, when you’re chronically ill you might not have the most exciting life. I know that normally I’m in my pjs by 7pm if I can be just to be comfortable.
I know that for me, personally, being called boring drives me mad and sometimes hurts my feelings. I miss being able to do fun things and not think about how long it will take for me to feel better after doing any kind of activity.
Instead, have a bit of empathy, c’mon.
“You’re too young to be ill/ have that illness.“
HAHAHAHAHA. I wish! I get this a lot and I know some of my fellow spoonies do too. I’ve had old people look at me in disgust with my walking stick and people eye me suspiciously and refuse to give me a seat on the tube.
Being chronically ill can impact anyone no matter what their age and because, without make-up I’m told I look 17 it does not help my case. Either way, age has nothing to do with it.
Instead, ask polite questions if they’re ok with that and ask them how it feels to be chronically ill/disabled by an illness at a young age. Also if you hear someone else making this comment, sassy replies are appreciated.
“Have you tried…”
People love to recommend things to those who are chronically ill and most of the time they want to help but sometimes those recommendations can be a little ridiculous. What worked for your brothers, nephews, girlfriends turtle probably won’t work for me.
Instead, if you have heard about something they might not have – think about how you phrase it. It’s all about the phrasing, try saying something like – “I heard about this thing, it made me think of you I don’t know if it would be of any benefit?” That way you’re letting them know that you respect that they know their own body.
I try my damned hardest to be positive where I can but living a life full of pain definitely wears you down. Telling someone to think positive can not only be irritating bust also hurtful. Think about why they might be so down and how you can help before saying it. Also word to the wise, comparing it to another illness is also not a reason to be positive.
Instead, let people have their moment – life with a Chronic Illness can suck! But also remind them of the things they’re good at, you can feel totally useless when you’re in flare.
“I know how you feel “
Unless you have a chronic illness, I’m sorry but you don’t. As much as people are trying to be empathetic here it can be so frustrating. You might be tired/ aching/ feel run down after the weekend but I promise you it’s not the same.
Instead, ask them if there is anything you can do to help or if they want to talk through stuff. Or just acknowledge that you don’t know how they feel exactly but you can empathise.
“Don’t take XX/ Does medication really work?”
Ah, commenting on someone else’s medication or treatment plan. This is a big one that, again, is often well meaning. A lot of the time people have heard horror stories of a certain drug and some don’t believe in taking medication at all.
From personal experience finding a medication that even remotely helps your symptoms can take a long time and causes a lot of side effects. For me alone I’ve had to try medication that has made me vomit, have headaches, increased my anxiety to the point of having panic attacks, have heart palpitations, night sweats and lots of other wonderful things.
Instead, if you really want to talk medication ask them about their experiences but honestly? I’d just leave it alone – it’s a deeply personal thing!
Is there anything you’d add or do you have any questions? Leave them in the comments below!