Things you shouldn’t say to people with a chronic illness

When chronically ill people tell others that we have a chronic illness, we often get a lot of the same kind of replies. Often the people saying these things might have good intentions, but these replies can be annoying or even harmful. So in this post, I cover some of the replies chronically ill people regularly get – and explain why you really, really shouldn’t say them.

“But you don’t look sick!”

You might mean this as a compliment, but “not looking sick” can really quickly turn into “not believing we’re sick” – not only by the general public, but by doctors as well. But the truth is that lot of chronically ill people don’t look sick, and that has two reasons. First of all, when you see us it is probably because we are having a good day. On our bad days, we tend to be stuck in the house. The other reason is that most chronic illnesses are invisible illnesses – our bodies look typical. But that does not mean that we are not sick. We might look great, but still feel miserable.

And to be honest: just because you can’t tell that we are sick doesn’t mean no one can. When I am having a bad day, the people closest to me can usually tell. And when I look at old pictures of myself, I can actually tell when I became sick – for instance, my face became a lot paler around the same time I started having symptoms. So just because you can’t tell that I am sick, doesn’t mean that I am not sick.

“I get tired too”

I have no doubt that most people in the world are pretty tired a lot of the time. But for most people, it’s because they are trying to juggle a job, a family, a social life, school – you name it. It often goes away once people remove some sources of stress and get a few good nights of sleep. But the fatigue that people with chronic illness experience is not the same as tiredness. Fatigue can feel like you have the flu. It can feel like your whole body is weighing you down, or like you’re moving through treacle. It is a kind of fatigue that makes you unable to even try to juggle all the things healthy people can. And it is not relieved by sleep at all. You might have good and bad days, but the fatigue never really goes away.

You might be trying to sympathize with us when you tell us this, but instead it trivializes our experiences. Our fatigue is really not the same as yours. And if you do experience it, it might be a good idea to talk to your doctor (disclaimer: they will probably not believe you and tell you that it is stress anyway).

“But you could do it last time, why can’t you do it now?”

Like I mentioned before, most people with chronic illnesses have good and bad days. Symptoms can fluctuate, and so can our abilities. We might be having a flare, a bad day, or are currently more affected by other symptoms than last time and thus have different limitations. When we can do something one day, it does not mean we can do it the next. And sometimes we might technically be able to do it, but it will result in payback later. Choosing to see our friends or even something like showering could leave us with a lot of pain and fatigue, and might make us unable to leave the house or even our bed the next day.

So please, believe us when we say we cannot do something, even when you saw us doing the exact same thing sometime earlier. We are not exaggerating. We know our own bodies best and we know from experience what we can and cannot do.

“Have you tried yoga/supplements/mindfulness/prayer/etc.?”

People who say things like these might mean well, but at the core it just shows they do not understand how chronic illness works. Whatever you are suggesting, believe us, we’ve heard it and maybe even tried it. But while some of these suggestions may help for some illnesses, they are far from a cure. In fact, most of them aren’t helpful at all or might even make us worse. Yoga for example can be terrible for hypermobile joints. And as a Christian, I believe praying is beneficial for your relationship with God and might bring you some inner peace – but it is not going to cure my illness.

So please, don’t offer chronically ill people advice on how to manage their illness if they haven’t asked for it. Even if you have the same chronic illness yourself and something has helped you tremendously, there is no guarantee it is going to work for everyone. Ultimately, only we can decide what treatments we want to try.

“Are you sure you can’t do X / need to do X?”

I’m starting to sound like a broken record here, but: we know our own bodies best. If we say we cannot do something, we cannot do it. Similarly, if we say we need to do something, like taking certain medications or precautions, we really do need it. If you ask us if we’re sure about these things, it sounds like you are not believing us and doubting our experiences. And when you are doubting whether we really need certain medications or treatments, you are doubting our diagnoses and doctors too.

An example of this I have experienced a lot lately is people trying to tell me that I am exaggerating in my Covid-19 precautions and I really won’t catch it if I just keep going out like usual. But here is the thing: the chance of me catching Covid-19 might not be higher than for the average person – but if I do catch it, I have a higher risk of complications and a permanent worsening of symptoms. I’d rather be super careful, barely leaving the house and only seeing a small number of people now, than having to do this for the rest of my life because my health deteriorated so much.

“I wish I could just stay home and relax all day”

So first, let’s make it very clear that not being able to work because of chronic illness is nothing like “staying home and relaxing all day”. Being sick all the time is not a vacation. There goes a lot of work into managing chronic illness that most people don’t see. I also would hope that if there is one thing that the lockdown has made very clear, it is that staying home and being unable to work isn’t fun at all. Abled people were bored within two months – and some of us have been at this for years.

Secondly, not all of us can’t work or are entitled to benefits. The idea that we all just sit on the couch and receive lots of money from the government is an ableist myth. Personally, I can work part-time and am not eligible for benefits – even though I don’t make enough to get by on my own. And even if you do qualify for benefits, it is often barely enough to get by. Disabled people disproportionally live in poverty. Being able to work is always preferable to “staying home and relaxing all day”, and if we could, we would.

“You just need to power through”

If only that would work, we would do it. In fact, a lot of chronically ill people probably do this all the time! We constantly do things even when we’re fatigued and in pain, simply because we have no other choice. But sometimes, we just really cannot do things. Pushing us to go over our boundaries can be incredibly detrimental for our health and well-being. Often, we already spend too much time “powering through” and need to prioritize rest instead.

Chronic illness is not just a matter of willpower. A lot of us identify as disabled: both our bodies and society limit the things that we can do. We are not here to “overcome” our illness or be an inspiration to people. We are also not lazy, broken or sad. We are living our lives just like everyone else – we just cannot always do the same things that abled people can. And that is okay.

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