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14 Things Not to Say to People With Chronic Illness

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Living with a chronic illness is often exhausting, painful and upsetting. But what makes it even harder is how society, friends, family and colleagues respond to our daily battle. Some chronic illnesses fluctuate. One day I could work my 9-5, go to the supermarket and bake. The next day I cannot get out of bed. To this end, I have written up a helpful guide of what to say and what not to say. If you want to be truly supportive, challenge your own ableist assumptions and be generally supportive or those with chronic illness, please read on.

And yes, I, like pretty much every other person with chronic illness and other invisible disabilities, have heard every single one of these.

1.”Get well” or “Get better soon.”

I know you mean well, I really do, and it sounds like such a kind thing to say, but please refrain from using this. For people like me with chronic illness, it just reemphasizes the fact that I will not get better anytime soon. I would much prefer someone to acknowledge the everyday battle I am going through and offer support instead of saying something that is quite simply meaningless to me.

2. “You should get that checked out.”

Really? I had not thought of that. (Sarcasm) No doubt your friend, family member or colleague has been through every test, check-up and assessment that exists and a few more experimental ones just for good measure. Chances are they have had some really uncomfortable and invasive procedures in every orifice and place you can imagine!

But seriously, we have. If you know someone has had a test recently, check in on them and see how they are doing because a lot of tests are very invasive and painful. But please do not ask for specifics.

3. “Well, you could yesterday…”

Welcome to chronic illness. It fluctuates and changes and a lot of the time we force ourselves to do things we cannot just so we can have a resemblance of a normal life. I may have gone for a walk or met up with you yesterday, but today it is just not happening. Sometimes our bodies give us a break, but other times it is kind of like being on a never-ending roundabout. We do not have much control over it on our own, but if you can lend a hand and stop it, we can try and find our way out.

4. “You always cancel! I can’t depend on you!”

This one really hurts, especially when it comes from a close friend or family member. I’ve already internalized this feeling and hate myself for it. I have lost so many friends because they have said I’m flaky and can’t be relied upon, as if I have any control over this. Chances are if someone you love with chronic illness cancels on you, they are already beating themselves up about it. Be kind and explain to them that it’s no problem and you can reschedule. Ask them how you can help or support them and if they want to talk. This is usually what we want to hear from our friends and family.

5. “I’m tired too.”

Please don’t equate or compare the chronic fatigue and exhaustion I live with every day to you feeling tired one day. Obviously, people get tired in general and I get that, but it’s just not the same.

6. “I wish I didn’t have to work.”

This is incredibly insulting to anyone with a chronic illness or a disability, whether they are working or not. It is not a choice for us! Those of us who can work are so grateful, as we have often lost jobs or been rejected for having a disability. A lot of us who cannot work wish we could, but because society has so many barriers that prevent this, the mere thought of trying to break through is exhausting and very often impossible.

7. “You’re so lucky, I wish I could stay in bed all day!”

This is not a choice and I definitely don’t feel lucky about it. Being constantly tired is not only exhausting and mentally draining, but it is also upsetting. I hate the days when I can’t do anything else but lie in bed and try to sleep. I am not in bed because I want to be. I’m in bed because my body is attacking me and I have no energy for anything else.

8. “You don’t sleep because you don’t exercise, work or do anything.”

No, I do not sleep because of pain, nausea, and a whole host of other things. I may not be physically tired in your understanding of the word, but I am exhausted, and I still don’t sleep. Often exercise and work can make our conditions significantly worse and exasperate our aches and pains. I want to do exercise because I want to improve my self-confidence, but if I know it’s going to make me worse, then it’s a hard pass from me.

9. “Have you tried yoga?”

Yes. Next question.

10. “Have you tried x, y, z healing potion? My cousin twice removed friend’s mum tried it and it cured her.”

Ah, the cure brigade. My counter-question, do you have a chronic illness, and have you tried this yourself? If the answers to both are yes, then OK, let’s talk.

11. “You’re way too young to have that.”

This is particularly frustrating to hear from doctors. How does this help me? I know I am conventionally too young to have this symptom or condition but I do, so empty statements like this just make me panic more and cause me to worry about the kind of future I will have.

12. “Can’t you just take something for it?”

Again I hadn’t thought of that (sarcasm). Here I am just lying in pain all day every day and I had not even considered that I could take something for it? For anyone in the diagnosis phase, we are often told we cannot take anything because pain medication might make it worse. Many with chronic illnesses have a strict medication routine and still live with severe pain. Medication doesn’t cure us and can only help us manage our symptoms.

13. “I’m sure it’s not that bad if you can still work?”

First of all, it is that bad. I am one of the lucky ones who can work, but I often have to take days, even whole weeks off because of my chronic illness. I am lucky that I have a very supportive workplace, but this was not always the case. I have lost jobs and been fired because of my chronic illness and I know plenty who were forced to leave their jobs. People with chronic illness often push ourselves more than we should so we can continue to work or pursue a specific hobby or passion. Just because I can does not mean it is easy.

14. “You don’t look sick!”

I know! This is one of the biggest barriers for many with a chronic illness or invisible disabilities. We simply do not look sick enough to get the support we need. The general lack of understanding of chronic illness and invisible disabilities is tiring. Yes, I may look physically abled, but I am not. Sometimes I wear makeup to hide how I’m really feeling. Chances are you will probably never see me when I am at my worst, because I will be lying in bed in pain in the dark waiting for the nausea to end. I may look fine, but I am far from being fine.

Getty image by Deagreez.

Originally published: November 2, 2020
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