Health

10 Things Not to Say to a Chronically Ill Person – The Break Down Wake Up Journal

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Please, just don’t.

Madeline Dyer
Photo by Mattia Ascenzo on Unsplash

I have been chronically ill for the last seven years of my life. During this time, I’ve had a lot of comments and remarks said to me that have been less than helpful, but I thought it would be helpful to write a list of them and show others why exactly these are harmful — especially as on the surface, many (though not all) can seem kind.

So, the ten phrases I’m going to be talking about in more detail in this article are:

  1. “You’ll get better soon.”
  2. “What? You’re still not better? But you’ve had this illness for ages.”
  3. “You did this last week, so why can’t you do it now?”
  4. “You should try yoga/organic eating/(inset any other suggestion).”
  5. “Is it all in your head?”
  6. “I think you’re just choosing to be ill.”
  7. “You should think more positively.”
  8. “God, I’d hate to be chronically ill.”
  9. “I couldn’t live like that.”
  10. “You’re such an inspiration.”

Those are the top ten – or at least the top ten at the moment. Because quite frankly, this list is always changing.

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A lot of these things are said by well-meaning people, but for many chronically ill people, myself included, they don’t always come across this way.

Let me explain.

We’ll start with the first one on my list:

This is often said in a well-meaning way, meant to convey hope, but all it tells me is you either haven’t been listening when I say it’s a chronic illness, you don’t believe me when I say it’s a chronic illness, or you place more worth in those who are better and healthy than those who are ill.

So you see how harmful all three of those can be for someone who’s struggling with illness?

This is one I hear a lot. A whole lot of a lot. And it ties very well into the one above. I mean, a lot of these tie together really.

But if you say this to me, expressing surprise that I’m still ill, more often than not, it just serves to remind me of my illness and how you only see me as my illness now.

Plus it makes me wonder: if you’re reacting like this now, how will you treat me in years’ time when I’m still unwell?

Unfortunately, experience has taught me that those who say this are often the first friends and family members who will disappear – and often it’s because they can no longer gain anything from me. I’m no longer useful to them, as they can’t see past my illness. I mean, it shows that they weren’t a true friend really, but still, it hurts.

Photo by Raphaela Vergud on Unsplash

A lot of chronic illnesses are variable – some days I can do more than others – but this is always one thing that I don’t like to hear.

It reminds me of my illness and limitations.

It reminds me of the unpredictability of my illness.

And it makes me suspect that those who say it are judging me and don’t quite believe that I am unable to do something now, because they’ve apparently had “proof” that I can do it.

This one comes down to a lack of understanding really. I recently asked some healthy, able-bodied people what their understanding of chronic illness was, and many of them were surprised to learn that days vary immensely. Some thought it meant that we can in fact do these things all the time but are just saying we can’t.

Have you heard of the Spoon Theory? It’s a disability and chronic illness metaphor that likens our energy to spoons. The idea is that every ill/disabled person starts off with X amount of spoons a day (the starting number varies per person and sometimes per day). Everyday tasks such as showering, cooking, and eating use up most of our spoons, leaving us with maybe one or two spoons we can use for ‘fun’ things — which is most often work things or medical things (such as going to appointments), you know.

This theory goes on to say that some days, we may be forced to use more spoons than we have, and this means borrowing spoons from the next day. So on day one we may manage to do a lot, but we’re now in debt for spoons on day two and three, meaning we’ll struggle to do even the basic self-care tasks the following day.

The thing about variable chronic illnesses is that most often we only let people see us on our good days, and often this gives the impression that we’re healthier than we are. You don’t see us on the days we have to take off to recover from our ‘normal’ days.

Oh this is one suggestion that every chronically ill person gets a lot. And it is usually paired with: “Oh my sister/friend/cousin/neighbour/aunt’s-friend’s-butcher did this and it made them better so I know it would work for you too.”

These statements most often come from a well-meaning place, I’m sure, but all it does is make me think that you believe I’m not trying hard enough to get better.

It makes me think that you believe I’m choosing to live like this.

Chronic illness is not a choice. It’s a thing that happens that we have no control over.

And don’t you think if there was something as simple as yoga that would cure me, I’d already have done it?

When people say these things to me, they’re also positioning themselves as someone with knowledge of my illness, and this is infuriating. Suddenly, you apparently have more knowledge of my illness than I do when I live with it. And if you’ve only just heard of my illness and I’ve had to explain it to you? Well, it’s even more annoying then.

Trust me, I’ve spent hours and hours researching my condition. I know more about it than you.

And if you’re not a medical professional, should you even be giving medical advice?

Of course, we know that you’re meaning well and you want to help, but maybe rather than suggesting things that you think we should be doing, you should ask us if there’s anything that helps or if there’s anything you can do.

And please please please understand that if we say there’s no cure currently for our condition, that means there is no cure. It’s not that we’re not trying hard enough.

(For more information on why this phrase is harmful, see my article “Please Believe Me When I Say There’s No Cure For My Chronic Illness.”)

Photo by Sydney Sims on Unsplash

I really hate this one – because so what if it is all in my head? That doesn’t make it any less real or any less painful or harmful. It doesn’t mean we’re not suffering.

Mental health issues are no less serious than physical health issues. And all questions like these do is contribute to the stigma around mental illness. The suffering is still real, whatever the cause. And people who say this, I’ve found, tend to be those who are skeptical and don’t believe me anyway.

When it’s said about my physical illnesses, it’s used in a way to belittle me and undermine the suffering I’m experiencing, because of the stigma around mental health issues. And of course that is harmful.

I mean, do I even need to say why you shouldn’t say this to a chronically ill person?

Ummm…. If I do, well, then, I don’t know. I give up. Some people just can’t be made to understand.

I really hate this one. No amount of positive thinking is going to rewrite my faulty genetic code and stop my joints from dislocating.

It’s often said by those who are telling me that my suffering isn’t so bad, that others have it worse than me, that I just need to think better in order to get better.

If only it was that simple.

Comparing my suffering to others’ suffering does not help at all — I’ve written more about this here.

And telling me that I need to be more positive only tells me that you’re not a person I can confide in or one who understands chronic illness. It tells me you think it’s my fault that I’m ill, because I’m not a positive enough person.

Um, well we’re not exactly enjoying it…

Being chronically ill isn’t something we’ve chosen. We have no control over it. But thank you for reminding us of this and for reminding us that you are healthy. Honestly, we’re glad you are, but we don’t want to be reminded about our illnesses.

Photo by Tammy Gann on Unsplash

Never – and I repeat, never – say this to a chronically ill person. Ever.

Seriously. Do you even realise how damaging this is?

I know it’s often said as a “good” thing where you’re trying to tell us how strong we are. But really? Do you realise the impact of words such as this?

It’s pretty close to other phrases such as “I’d kill myself if I had your conditions.” And yes, that has been said to me before.

But my life isn’t any less valuable just because I have these illnesses. My life is still worth living. Illness and disability aren’t things that need to be ‘fixed’ in order for people to have good lives — that’s just a very harmful stereotype and assumption that’s prevalent in popular culture, especially in SF movies that are based around an invention that cures people of disabilities and illnesses and then allows these people to have happy lives.

I may be chronically ill, but I am not unhappy. And we really need to see more chronically ill characters getting their ‘happy ever after’ in books and films without needing to be ‘fixed’ first.

And finally we’ve reached my favourite thing not to say. Really, please don’t say this about every day things I’ve done.

I’m not an inspiration for just carrying on with my life when I have chronic illnesses.

I’m not an inspiration that others should look up to, just because of my illness.

People mean well when they say this, but honestly, it can come across as patronising and condescending. I’ve had people say I’m an inspiration when I’ve been out shopping alone and I’m using my crutches. Likewise, people have said that I’m an inspiration because I managed to go to university when my autonomic system was failing.

Oh – and this is my favourite one. “Oh it’s so lovely to see you out and about. You really are an inspiration doing this and showing others that illness doesn’t have to be controlling and you can still live normal lives.”

And what was I doing? I was queuing up for a book signing that I’d wanted to attend.

But I was apparently “still leading a normal life?”

Um, doing stuff that people do every day makes me an inspiration?

No, it doesn’t. All it does, when you say that, is tell me that you can’t see past my illness, that you’re fixated on that. It tells me that you’re viewing me in a different way to able-bodied, healthy people.

And it tells me that you think my purpose now is one of these things: to be there to show others that even I can do normal things, to educate others and make them feel sorry for me, or to make others feel better about themselves and their own lives.

Simply living my life does not make me an inspiration.

These words should be saved for truly inspirational people. Me managing to have an independent day once in a while doesn’t make me an inspiration. It just means I’m trying my best to be “normal” (whatever normal is).

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