What not to Say to Someone with a Chronic Illness

What Not to Say to Someone with a Chronic Illness

Blog post by Iris Carden

There are some things people with chronic illnesses get very sick of hearing. Here is a list of some of the things we most hate hearing. (I’m sure other chronic illness patients would have many they could add to the list.) I’m adding some favourite responses.

You don’t look sick. You don’t look stupid, yet we’re having this conversation.

My cousin’s friend’s coworker’s partner’s drug dealer had that, but they got better. That’s great for them if they’re in remission for whatever they had. My incurable disease doesn’t get better, I have had to learn to live with it.

I’m a psychic/herbalist/faith healer/amateur chemist/person who thinks they know everything. I’ve got a cure for that. Great. Let me know where I can get a copy of the peer-reviewed clinical trials results, so I can discuss it with my specialist.

That disease isn’t real. It’s all in your head. In my head, in my blood tests, in my xrays, in my joints, throughout my body. It’s everywhere, just be glad you don’t know how real it is.

But you could do it yesterday. In chronic illness terms, yesterday is ancient history. Episodic conditions flare up and settle down at a moment’s notice. A good day yesterday doesn’t guarantee a good day today. Before you ask, I don’t know what I’ll be able to do tomorrow.

All those prescription drugs you take are dangerous. You should take this supplement instead. I realise you’re willing to risk my life on your unproven whatever, but I’m not. I know the medication I take is dangerous. I also know that not taking it is even more dangerous.

It can’t be all that bad, there are people who are worse off. I’m fighting for my life here. Other people being worse off doesn’t make my situation any better.

At least you don’t have cancer. No. I have a dangerous disease that could kill me at any time. I have taken dangerous drugs (including steroids and chemotherapy drugs cancer patients take) for a decade, and will keep taking them as long as I live. So no, I don’t have one of any of the multiple types of cancer out there ranging from inconsequential to life-threatening, but that doesn’t mean I have it better than cancer patients. You can’t compare one to the other. They’re both a living nightmare.

You just need a better diet and more exercise. Thank you. I will pass that information on to my dietician and my exercise physiologist. They’ve both got years of training and experience, and worked hard on my current program, but I am sure they will appreciate your input.

You were born with an immune system that fights off disease. You should count on that instead of medication. I have an autoimmune disease. My immune system has gone rogue and is trying to kill me. That medication is the only thing stopping it from doing so.

Autoimmune diseases don’t exist. Funny how my blood tests keep showing something that doesn’t exist. It’s a bloody painful non-existent thing too. It’s also a pity about the organ I’ve already lost to this thing that doesn’t exist.

You’re always so negative. A positive attitude would make you feel so much better. Thanks for your advice. I’ll just go paint a smile on my face before I feed my unicorn and ride off over the rainbow. Real life, and constant pain, are just too negative.

You’re not in a wheelchair, you don’t need a disabled parking spot. I have an official permit to park in a disabled spot, which means both my doctor and the authority that grants the permit agreed I do need it. There are very many disabilities, ranging from arthritis to chronic heart disease, that you can’t see, but limit how far a person can walk. Any further information is none of your business.

For the most part, I try to keep a sense of humour with things like this. Some people genuinely don’t know and are not wilfully ignorant. Some people, however persist and persist, and in one case, I gave up going to a writers’ group I loved, to avoid the constant harassment from one person there.

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By Iris Carden

Iris Carden is an Australian indie author, mother, grandmother, and chronic illness patient. On good days, she writes. Because of the unpredictability of her health, she writes on an indie basis, not trying to meet deadlines. She lives on a disability support pension now, but her ultimate dream is to earn her own living from her writing.

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