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What they don't tell you...

Dec 04, 2015 6:33 PM

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… 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 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 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.

Dec 04, 2015 7:11 PM

The end, about a doc finally believing you, I really relate to. Had many docs want to help, or not. Nurses would know more than some docs, because they saw the people, not the pain. My best doc so far was one at urgent care, who knew what CRPS was because a relative (also a kid!) had it, and understood that I already tried many things to stay healthy and hydrated.
He's the best doc I've met, even though it was the one appointment, and it was completely unrelated; a sinus infection. The only doc who didn't manage to tickle me (which either causes massive pain, or sends me writjing several feet away, if I'm lucky) when listening to my breathing, and just doing a basic examination.
He also told us about Quinine and tonic water as a alternate for one antibiotic if been given a week or do before.

Dec 04, 2015 7:21 PM

The only Dr I ever felt really treated me well was my old pediatric chronic pain specialist. I miss that Dr so much, now that I'm 18 i can't see him. The one I have now knows what he is doing, but isn't too personal about his job, but I'm just going to take what I can get right now haha.
I just was thinking about my old Dr and decided to type out a long thing lol

Dec 06, 2015 7:55 PM

Jenna, I can relate to every word you wrote. I'm praying for strength & courage for you to get through what you're going through. I hope and pray things turn around for you very soon, from the bottom of my heart! (((Hugs))) 🙏🌼

Dec 06, 2015 8:18 PM

Jenna how articulate you are! You perfectly described where anyone in a similar situation, including myself has, is, and will be in at some point.

You are an amazing young lady and stronger than so many with years beyond yourself. You have had to grow up fast in your situation but what an amazing job of growing up you have done.

You deserve and I hope you find some relief, some time to be a young woman and show the world just how amazing you are.

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