What I Hear When People Make Comments Doubting My Illness


Today, I was talking to someone close to me.

They asked if they’d woken me up — which they had. Despite the fact that it was almost seven at night, my chronic fatigue means that I can’t control when I fall asleep. I’d fallen asleep at around five, I think, but I’m not really sure.

It wasn’t planned. Like it always does, it just happens. It’s not controllable. Chronic fatigue means I’m constantly tired. And I constantly fall asleep. Seriously. One time I went to sleep at Disneyland.

Anyway, I could tell that the person I was talking to was annoyed — they’ve made it clear more than once that they feel that I can somehow control this. Despite the fact I’ve had this diagnosis for over a year; despite the fact that I’ve had five sleep studies to get the results, among other countless tests.

And then I realized what bothered me about this conversation.

It wasn’t that this person still thinks I can control what happens, nor is it the fact that they don’t really believe me.

And if you’re sick, whether it’s mentally or physically, you’ll know what I mean. They “believe” you. But at the same time, they don’t.

I mean, are you sure you haven’t tried a new diet?

Are you sure you can’t do this?

Are you sure?

No, what I realized after I raged and cried after the phone call, was that it wasn’t the lack of belief, or even the lack of support, that bothered me.

It wasn’t even the fact that this person is extremely close to me. So close, in fact, I’m deliberately not mentioning their name.

It’s what the not-believing implies. It implies that this is a life I want.

It implies that I’m OK with being so tired that going to the bathroom is torture. That sometimes, I’m so tired, I wait until my stomach bloats and cramps and I can’t hold it in anymore because I’m so tired I’m struggling to work out how to make it the 15 steps to my bathroom.

It implies that I’m OK with the fact that sometimes I’m actually too tired to watch anything. Not read, not write, not work out, not eat … but I can’t even watch something mind-numbingly boring on TV because I’m literally too tired to keep my eyes open.

It implies that I’m OK with being dependent on others.

It implies that I’m OK with a lifestyle of living day-to-day, hoping that tomorrow will be a good day.

And that’s bullsh*t. No one would choose this life. No one.

No one wants to be so tired it hurts to move.

No one wants to be so tired that they wait until they can’t physically hold in their bladder anymore because they’re too tired to move.

No one wants to be too tired that watching TV is a chore.

We aren’t talking about being lazy: my God, what I would give for me to be lazy.

We are talking about a life that I actively hate. I have a good life, but my daily activities are dependent on whether I’m too tired to move or not.

That’s not a life.

I get that I have an invisible illness. I get that you can’t see it. I get that I’m not alone, and that others have it just as bad, or even worse, than I do.

But before you don’t believe someone, before you start to pass judgement, think about what you’re saying: Would you want this as your life?

Would you want to spontaneously fall asleep, having no control over yourself?

Would you want your life to be spent sleeping?

No?

Neither do I.

So before you pass judgement, before you make the assumption that this is a choice or something I want (or anyone else wants), stop. Please.

No one would want this. No one would ask for this. Please stop pretending like it’s a choice.

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