I’ve been believed! It only took a year…

Last week I had an appointment that has completely thrown me off my balance. Not because it was a bad one, and not because the doctor was bad – it has thrown me off precisely because he is the exact opposite. I have no idea how to react to it.

Since having my upright MRI a year ago, I have come up against the most horrific consultants within my local hospital. I have spent a year being told that my scans show absolutely nothing, that I have no neurological symptoms whatsoever (tho had he of carried out an exam, he would have discovered many) and that I have no idea what I’m talking about. They have been quick to judge me as stupid and gullible, and even quicker to suggest that everything is mental health related. This toxic way of being has leaked out into other areas, and it has gotten to the point where I have repeatedly chosen to avoid appointments rather then put myself through another round of humiliation.

Worse still, without the backing of an NHS doctor to confirm my conditions, I have come up against family and friends who refuse to believe its possible for this type of treatment to take place. I have been constantly questioned about how I know the radiologist or surgeon in Barcelona are legitimate. “How do you know they aren’t just trying to make money from you?”, “How do you know you really have these problems?”, “How do you know you’re really going to get worse?”, and “I can’t believe that there’s no one in the UK doing this surgery, you just don’t know what your talking about” have all been repeatedly thrown at me during conversations like some sort of twisted broken record.

There is nothing worse than having to prove that you are ill when you feel this horrific every day.

However, last week everything changed, and I won’t lie – I have no idea how to respond to it. I have spent so long fighting to be listened to and believed that I never considered how it would feel when that happened.

I had an appointment with a neurosurgeon down at Kings College Hospital last week. Its an appointment I had repeatedly rearranged because I couldn’t cope with another dismissal, but come the 3rd appointment I really couldn’t get out of going any longer. I reluctantly packed an over night bag, and took my PA down to my parents for the night. The feeling of dread I had was worse than it has been for any exam.

We arrived at my appointment, and as I sat in the waiting room of the neurology clinic I really was questioning how I had gotten there. How was I sat in a room full of such obviously ill patients? How was I sitting there and recognising the types of movements, twitches and weakness as things that my body has also started doing? Is that really the way that these neurological issues progress? If so I don’t want to stick around for the ending.

We eventually got called in and to my surprise the consultant was not only happy that I had had an upright MRI, but also agreed with everything on my report. He went through it pointing things out, and after doing a proper neurological exam, he also found that I have hemiparesis on my right side, sensation changes, and balance problems – just as the consultant in Barcelona told me. He also checked my eyes, and the sight in my right eye is significantly worse then my left – as this is on the same side as the weakness in my body, he rang me to ask if I could talk to my GP about having it evaluated by ophthalmology at my local hospital as a ‘base line’ to keep track of future changes.

He took time to explain what the normal procedure would be for someone without EDS – usually this would be treated with surgery that removes a chunk of the skull to allow extra room. He also told me that due to my EDS and instability surgery would be much more complicated. For this reason he is referring me to the skull clinic at Kings, and also for the skull clinic MDT meeting to get ‘as many heads on this as possible’.

I am utterly shocked that all it has taken is a 2 hour train journey for my scans to suddenly show just what I already knew – that this is real. It seems like some sort of sick magic trick – now you see it, now you don’t.

Along with the shock came the initial relief. I hadn’t had to argue, I hadn’t had to prove myself. I was relieved that I was believed, and for a few days those feelings stuck, but with being believed comes the knowledge that I really do have something serious going on. These conditions are not something that I will just get over, nor will they go away without treatment. I will likely continue to worsen over time, and the end result of that is a very scary place indeed. Considering how much worse I am now then just a couple of years ago, its not exactly a slow process.

So now from being believed comes a ton of emotions that I really didn’t bargain for. I spent so long convincing myself that maybe I was wrong, and so much time telling myself it wasn’t really that serious. I have spent a year trying to tell myself it hasn’t existed, so now I am hit with all of the scary emotions I should have been able to have when I found out what my scans showed in the first place. I should have been allowed to be scared, upset and angry a year ago, but instead I had to fight continuously to be believed. I wouldn’t wish this treatment on my worst enemy.

I am happy that its now being counted as an actual medical condition on my records, and happy that I have at least 1 doctor on my side, but the reality is still that they are unlikely to be able to treat me surgically in this country. We still have no one that has done these operations on EDS patients in the UK, so I can’t help feeling like no matter how understanding this consultant is, I am still just as stuck as I have been.

The only way out would be too fundraise to go abroad, but I cannot face the idea of becoming a sob-story or being known only for my illnesses. I can’t face the idea of begging people to help me when there are so many others who are equally needy but who have families or partners that need them to be around. I really don’t know whether to laugh or cry. How on earth did my body so spectacularly go wrong?!


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