The Waiting Game

Not knowing can be terrifying, it can be exciting, it can be neither one nor the other and it can be everything all at once.

One of the hardest things I’ve ever encountered in my life is the unknown. Not knowing can be terrifying, it can be exciting, it can be neither one nor the other and it can be everything all at once. But perhaps the worst part of the unknown is that often, there is simply nothing that you can do about it. It’s a game of patience, of waiting and wondering, hoping that the outcome will be good, or at the very least, that the outcome will not be bad.

Being sick is filled with unknowns, every day I face a new unknown relating to Chronic Fatigue. I don’t know how long until my next flare, I don’t know why I have (ever so slightly) got pins and needles in my wrists right now, I don’t know whether I will be able to sleep tonight, or if I’ll be able to get up again in the morning. But perhaps the worst unknown I’ve ever felt is the not knowing what is wrong. Not having a name for the problem, not having justification and more importantly not knowing whether it is even real.

Because when you don’t have a name for it, it really does feel like maybe it isn’t even real. Maybe it’s all in your head and you’re actually just crazy. That’s what the doctors would have you believe right? No-one could possibly be experiencing what you are so you must be crazy. Maybe you have depression. I’ve never heard of that symptom so you must be making it up. IT IS ALL IN YOUR HEAD.

Except it isn’t. And so they give you drugs and they make you talk to counsellors and do more exercise and you don’t get better. In fact, you get worse. The symptoms worsen because now, not only are you ill with no known name for the illness, you are also being pushed out of your comfort zone, you are developing depression because you’re starting to believe you are crazy, you’re stressed because nothing is going right and on top of all of that? On top of all of that you are receiving the wrong treatment that is actually HARMFUL for the illness that you really have.

Not knowing can be terrifying

But you must sit and you must wait, and you must keep trying. When the first doctor stops listening, you try the second, when the second stops listening, you try a third and you keep going because you have to. Because this isn’t some little thing in your head. This is life or death. And then finally you find a doctor who will listen and who will try and they test you for every illness under the sun and they don’t just stop at the first diagnosis that “pretty much fits the bill” they keep trying until they are 100% convinced. They break the news to you in as best a way as they can, trying to be sympathetic, aware that this news, this diagnosis, is absolutely devastating to your life. You sit and you listen and you finally hear a name, and the words “there is no treatment” are completely blocked out by your tears. The doctor thinks they f***d up, they took it to fast, they should have been more careful about how they said it, they should have told you to bring a support person, they should…. But these aren’t tears of despair. These are tears of happiness. It has a name.


It’s real, you finally know it’s real. It’s not in your head. You’re not crazy. There’s no cure, there’s hardly even any decent management plans and you have absolutely no idea what you will do now, but it has a name.

It is no longer unknown.

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