What they don’t tell you is how much they want to stick you in a lab or on a slab so that they can study you, watch you and work out exactly what makes your condition tick… because with a condition like mine, syringomyelia, they know what happens, they know everything that’s going wrong but not why.
They can’t tell you why some mornings you’ll wake up paralysed but not others.
They can’t tell you why you’re damn kidneys give up so you end up on the brink of death with septicemia.
They don’t know why just walking to the bus stop makes you feel like you’ve been hit by the bus you need to get on.
They don’t tell you that you’ll feel dead before you’re life has even begun.
They don’t tell you that they don’t know why or how your condition is doing what it’s doing.
So instead they deny that your symptoms are real.
They make you think it’s all in your damn mind so you’ll stop complaining, so you’ll stop crying out for help because you feel like you’re constantly falling just so that they don’t have to tell you what they really want. They want to stick all the sufferers in a lab and watch them, study them, cut them open, put things in, cut things out just because your condition strikes up their curiosity. They tell you that it’s in your head so you’ll leave, so the temptation of doing science experiments on you doesn’t become overpowering.
They don’t tell you that when you go to A&E a trainee or newly qualified doctor who hasn’t quite figured out how to hide his thoughts, his disbelief, his disgust, his confusion or his raw curiosity from his patients will look at you, at your hospital records, like an excited kid in a science class. They don’t tell you that these inexperienced doctors will poke and prod you in the ways you’ve been poked and prodded a thousand times just because they haven’t got to poke or prod someone like you in that way before.
They don’t tell you that every doctor will be Googling your condition whilst you wait for them to treat you because they’ve never even heard of it, or have only heard of it briefly.
They don’t tell you that they’ll come back in acting like they understand your condition as if it was as simple as 2+2 just so that you’ll let them do all these necessary tests on you. They don’t tell you that no matter what test they do, it’s all in your head.
When you get diagnosed no one tells you how the doctors will see you as an experiment or an exhibit, how most of them don’t actually give a shit about the person, they don’t tell you how all of these things will make you feel like you’ve been put on this earth to entertain. No one warns you that when you meet a doctor who admits they don’t know shit, or one that’s worked with someone with your condition before so they know you’re telling the truth – no one tells you that meeting these very few doctors will reduce you to tears because you cannot believe that finally you’re a person and you’re believed.