How I have learned to talk about an invisible and less-understood chronic illness

I have had Chronic Fatigue Syndrome (CFS, ME) since my teens, although I had a period in my twenties and thirties where I functioned better.

Through experience, I have learned a bit about how to talk about it. If I say I have CFS/ME, it won’t mean much to most people. They think it means I am a bit tired, or – in the worst case, which I have experienced during my education – they will dismiss it or even see it as an excuse for laziness. (In my studies and work, I was anything but lazy.)

So I learned to talk about it in a different way. Now, I say I have a chronic illness, and I add whatever makes sense in the situation. I may say it causes me to need to rest a lot. Or it makes it difficult for me to think and it takes time for me to think through things. Or that it makes it difficult for me to talk coherently. (When I am extra exhausted.)

That makes more sense to people. Most people have a rough understanding of what a chronic illness means, even if there are many types of them. Most take it seriously, respect it, and don’t feel they need to question it. (Or give uninformed advice.) And that makes my life much easier.

As with so much, the way we frame it – to ourselves and others – makes a big difference.

Note: I don’t often call it a disability, even if that’s what it is. In some situations, I would probably use that term as well to bring home a point.

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