My chronic illness affects every single part of my life, but it doesn’t really look like it. My chronic illness – fibromyalgia – is invisible, so although I feel in pain and / or fatigued 24 hours a day, 7 days a week, I look like a run of the mill able-bodied woman.
There is a level of privilege attached to this of course, but it also comes with its own set of problems - invisible disabilities mean that often times, people don’t believe that I’m actually sick. This leads to people saying common things that, despite usually having good intentions, can come off as rude, dismissive, and ableist.
The one I’ve heard the most is something that has undoubtedly been said to every person with an invisible disability or illness – the dreaded ‘but you don’t look sick!’. This happens all too often as an offhand comment, but it’s also been followed by heartbreaking situations like eventually losing friends who haven’t believed my illness was real because I didn’t look or act sick in the way they thought I should.
So, to give you a bit of a crash course, here’s some examples of what NOT to say to people with chronic illness.
‘But you don’t look sick!’
Yep, I know – but I am. These five words reduce health down to appearance, which is not the case at all. You might be saying this with the best intentions (hopefully shock, because I look ~too stunning~ for someone who’s actually very ill) but what it actually does is hits on one of the biggest fears of chronically ill people – that people don’t believe us.
Whenever someone says this, it just reminds me of the many times people haven’t believed I was sick, because I didn’t *look* sick. You might mean it supportively, but all I hear is doubt.
‘Have you tried _________?’
I can guarantee you, every chronically ill person has tried absolutely everything they physically and financially can. I cannot think of one person who’s simply said, ‘ah bugger, I’m chronically ill. I’m not going to bother trying things to feel better!’
Trust me, we’ve tried it all; all the doctors’ and specialists’ suggestions, and yes, a bunch of the tinfoil hat ones too (desperation and lack of medical answers make for strange bedfellows).
Examples of suggestions I’ve received over the near-decade I’ve been ill include: various supplements, Chinese herbs, marijuana, LSD, ketamine, essential oils, drinking my own urine, crystals, B12 shots, spirulina, charcoal, detoxes and juice fasts, prayer and religion – the list goes on, and I’ve tried some of them (I’ll let you ponder on which).
And before you ask, yes we’ve all tried yoga — just because it ‘cured’ your sister’s friend’s cousin’s shoulder pain and she’s now a yogi in Bali, doesn’t mean it will cure my entire nervous system malfunctioning.
‘But you were at work this week/out on the weekend, so you can’t be that sick!’
Yep, I was at work this week, or you saw a photo of me catching up with a friend on the weekend. That’s irrelevant to whether I look ‘okay’ to you now – I’m still ill, and I was then too.
The nature of chronic illness is, sadly, extremely unpredictable. I can have totally manageable levels of pain and fatigue one day, and barely able to walk the next. Sometimes it’s because I accidentally overexerted myself and went over my limits, but sometimes symptoms flaring can be completely random. If you find it annoying, just try to imagine how frustrating it is for us. Regardless, I am always sick and in pain – some days I’m just able to manage it (and hide it!) better than others.
‘You just need to snap out of it and push through.’
'Pushing through' actually makes me, and many others with chronic pain and illness, worse. One of the first things I was taught by pain specialists was pacing, and knowing my limits. I am sick every single day, and know my body and my limits better than anyone - so telling me to ‘push through’ is actually the worst possible advice. When you’re talking to someone with a chronic illness, remember: just because you’d be able to manage something, doesn’t mean they can or should. Don’t assume someone’s health and limits for them. It totally removes their agency as a human being.
‘You’re too young to be sick!’
Yep! I’m young! And sick! It sucks. But sickness and chronic illness isn’t exclusively the domain of the elderly; people of all ages can get sick. Doesn’t make our experiences less valid, or our identities abnormal. We’re just sick in a cool young person way, I guess? I don’t know – it’s a weird thing to say, so just don’t.
‘If you stopped talking about it all the time and looked on the bright side, you’d feel better.’
I do! To be totally frank, if I didn’t look on the bright side I wouldn’t be alive right now. Being chronically ill is tough as hell, and many chronic illnesses have strong ties to mental illness. I have to look on the bright side A LOT, otherwise my depression and just the daily battle of being sick would drag me down and I wouldn’t be able to get out of bed.
Also, people should be able to talk about their lived experience as much as they deem appropriate, and disability and chronic illness is not spoken about enough. Let them vent, let them explain, let them talk about their day!
‘Aren’t you worried about taking medication for the rest of your life?’
My meds help me live a slightly less painful existence, and being more comfortable for the remainder of my life sounds awesome. Also, a medical professional who studied for many years gave them to me, and I reckon they might know a scooch more than you about this.
‘It could be worse.’
Yeah, I know. You’re right, it could totally be worse! But hearing that stings, because it simply comes off as dismissive of the issues that I do face. Illness and disability don’t exist on a hierarchy, and most of the chronically ill people I’ve met over the years don’t see our illnesses as some kind of competition. Our experiences don’t invalidate each others, but able-bodied people comparing us does. Plus, just because things could be worse doesn’t mean we don’t have the right to talk about our experiences, and vent about things that are bothering us – just like everyone else does.
‘I wish I got to stay home and not work all the time!’
Yeah well, I wish I was able to work regular hours and earn a decent salary. Having a flareup isn’t exactly a holiday, Karen. Being stuck at home writhing in pain or unable to move from fatigue is just such a fun relaxing time. Can’t get enough of it. You wanna swap?
Chloe Sargeant is a freelance writer. You can find more of her work here.