People keep asking me if I'm pleased or relieved or happy and yes, I guess in a way I'm a little of each. But a part of me is angry. Really. Fucking. Angry. Not because they didn't diagnose my EDS when I first started showing symptoms all those years ago. Though had they, I may not have had over 20 ICU admissions for respiratory failure, I may be in less pain and I may not have been accused of being mentally ill. I'm angry that doctors and the medical profession as a whole have ruled my life for 13 years. Let me explain a little ..
In 2002 my mum moved away to Newcastle and I moved into a homeless hostel. I'd been in and out of hospital for the whole year previously having scans and tests, seeing different doctors. But they couldn't find anything. My brain and spine were both clean and the neurologist I was under at Addenbrookes hospital was sure there was nothing to find. It was my Neuro who said I had ME and suggested I could be managed by my GP but gave me a referral to Prof Wessley's team in London. I remember going with my sister in my recently received NHS/red cross wheelchair and seeing a registrar from Wessley's team. We talked for over an hour, I walked for him, he did an examination and he told me at the end I didn't have ME. The bit that scared me though, was his remarks about my mental health and the 'rules' he suggested I followed. He told me that I should have another round of investigations from the Neuro team at Addenbrookes but that once they'd come back negative I would have to accept that I had a mental illness, Somatoform Disorder. It was his 'suggestions' for my life style that really changed me though. He told me that I needed to adjust my thinking totally, that if I chose to adopt the 'disabled lifestyle' doctors would always think I was making my self ill. A few of his suggestions included not using a wheelchair or walking aids, not spending time with any disabled people, not using the internet to communicate with disabled people, ignoring all my symptoms and going on with college no matter what and no longer requesting to see other doctors. It didn't just stop there, he talked about how everything made me look like I was faking, he told me that asking to see other doctors would make it look like I was hoping one of them would diagnose something and that spending time with other disabled people would make it look like I was learning 'how to be disabled'. The letter this doctor wrote about me was 4 pages long and it sparked the beginning of my battle against a mental health diagnosis. It also sparked to battle against doctors who believed entirely that I was making this all up.
You might think these 'rules' are stupid and that doctors don't really behave or think like that, but you'd be so terribly wrong. A few years later, I visited a neurologist with a good friend in a different part of the UK. I went in to her appointment with her (in my manual wheelchair) to support her. I was shocked and disgusted when within moments of the consultation beginning his attention turned to me and what I was doing in a wheelchair. He was so horribly rude that my friend was incapable of driving for almost an hour. And it didn't stop there, we were both astounded when his report came through and the first paragraph was about the friend she'd brought with her. It was made very clear that her illness was taken less seriously because the support network she had included disabled people.
Over the years the pressure to never give the doctors any more ammunition was huge. Both my long term partners had impairments and while most people would lean on their partners for support at hospital appointments, I was unable to. I'd had to go alone, leave them in the car park and from time to time I'd even ask them to walk to appointments with me so people wouldn't see them in wheelchairs.
My whole life became compartmentalised, there were things doctors could know about me, and things they couldn't. They could know that I walked with sticks from time to time but not that I used wheelchairs, that I had partners but not that they were disabled, they could know that I had an interest in politics but not that it was the politics of disabled people that I worked in. They could never see me without make up, nice clothes, clean hair, shaved legs, even if I actually wasn't well enough to be spending hours looking after my self, letting them see me 'uncared for' (as they so beautifully put it) would only add to the notion that I must be mentally unstable.
Sadly, it didn't stop with the medical profession. There were some people in my life who were just as unsure about my illness as the doctors and took it apon them selves to make their position clear. I had disgusting e mails from friends of friends who couldn't believe I was faking it when their friend really had 'whatever' impairment and were really unwell. There were people who decided they should save me from my self and threatened to call my GP in a bid to get me sectioned. And then there were the people who just never really believed me, who never really supported me, who wouldn't talk about it or would drop the occasional comment that made their thoughts on the matter clear. Some of them I didn't really know, some of them were friends who I'd trusted with my deepest fears and who took advantage of that. And some are genuinely sorry they put me through that.
The thing I am really disappointed about though, is the way I reacted to the treatment I received from medics. It's like telling a child, over and over, 'that person is fat' whilst pointing at random people on the street. Eventually, that child see's fat people all over the place. I stated to question everyone, I started identifying all the things the doctors pointed out in me, in other people. I became judgmental and cruel towards other people with undiagnosed impairments or impairments that are debated by the medical profession. Now I'm not a child. As an adult, I should have known better. As an adult who felt persecuted not just by doctors and the medical profession, but had been so deeply hurt by people questioning my own impairment/mental health, I'm pretty disgusted with my own behaviour.
In the last 5 years, my impairment has developed and I now struggle with life threatening infections and recurrent respiratory arrests. At my worst, I found my self in ICU up to every 6 weeks and would often be intubated for weeks at a time. I remember my worst admission in little snippets of flash backs. I went in with a kidney infection. After a couple of days I stopped breathing and spent a week in ICU. I'd only been back on the ward a couple of days when my kidneys failed and I ended up in a coma for 3 days. A few weeks later, having had to come off all medications and therefor going through morphine withdrawal, my lungs slowly filled with fluid. Eventually I crashed and had to be resuscitated. I was intubated and taken to ICU. I was told I was in heart failure when they woke me the next morning. 24h later they attempted to take the tube out. I managed about 8 hours before I crashed again and I had to be reintubated. I didn't wake for 3 days and my life hung in the balance as my heart developed pulmonary hypertension. When I finally started to come round, the pulmonary hypertension was severe and my blood pressure spiked at 222/200. The ICU consultant had been asked to come see me urgently and I remember him standing over me, telling me I was doing this to my self. He said I needed to calm my self down. I couldn't answer back, and trust me when I tell you I was drugged up to the eyeballs. I was not anxious or panicked and even if I was, a slight rise in BP is all you would expect! When you have conversion disorder on your notes though, everything is your fault. You're always to blame. Always.
I've actually never had a diagnosis of anything that's stuck. I had a diagnosis of ME at the very start of my impairment and that's pretty much it (bar little things, like high blood pressure or Asthma). But I have had a few things that hung around while doctors debated if I had it or not, conversion/somatoform being one but Muscular Dystrophy was the other. Whilst I never had a specific and final diagnosis of this, the Mitochondrial type I was suspected to have has over 900 forms so even though I was tested for the 9 most common they couldn't real rule it out. For the last couple of years I've been using MD when people ask what my impairment is, simply because it's the closest thing I've had to a diagnosis and to be perfectly honest I couldn't face trying to explain conversion disorder every time I needed to talk about my physical health problems.
I'm not sure where my disease of the mental health diagnosis came from, or if I just knew somewhere I didn't have conversion, but I can't get over the ignorance the doctors showed towards me and the possibility of my having a conversion disorder. Most of the medics clearly had no idea what CD actually is, they would constantly tell me I was doing it my self, put the blame onto me. From time to time someone would be sure to let me know that they knew the difference between my faking or making it up (Munchhausen/malingering) and CD when you have absolutely no control over the symptoms your brain is creating. They were few and far between though, I was treated like a second class citizen by so many of the medical staff. I was almost never given physio during my stays so that I would maintain what strength I had, I was often told my breathing wouldn't be as bad if I would just give my self a good talking to or I would be told by doctors there was no point doing tests/treatments because there was nothing wrong with me. I've always felt pretty terrible that I fought the mental health diagnosis so fiercely, I know people with all kinds of mental health problems and I always felt had there been a really specific reason why they were so sure I had CD I would have been far more open to the idea. But telling me over and over that my symptoms were medically unexplained or suggesting that I had been abused by my parents were absolutely not going to assure me this was what I had.
Thirteen years is a long time. It's the whole of my adult life. And I've been through all kinds of emotions in that time. Severe depression, terrible guilt, horrid fear to name just a few. Thankfully, the last 3 or 4 years I've found a really lovely peace about the whole thing. Those with a diagnosis probably don't realise just what they gain from that. Simply knowing what you have gives explanations for things, gives doctors ideas when treating you, helps you find support from people with the same impairment and a peace of mind that while you might be dealing with something difficult, your not dying of a terrible disease. Living without a diagnosis is hard work. And that's not just from a medical point of view. The truth is that it has a huge effect on your friends and family too, they don't know what to expect, what to tell people, how to deal with difficult symptoms. It's hard for partners also, when you've no idea how life might pan out with this impairment. And it's horrid when people ask you what causes, say, your mobility issues or when you have to fill in a form like DLA. But I've been doing this for a long time now, I've learned not to expect things, to make it clear to friends that I do my best, to explain to my family what little bits I do know. I fill in forms with every ounce of detail I have, get letters from every doctor I trust and keep my fingers crossed that my not having a name won't hinder my application. I'd reached a point though, where I was comfortable saying I had no idea, where I could be happy in my own skin without constantly worrying about the next time I would need to give that level of information to someone. Even when I became a foster parent and my GP had to write a letter, she couldn't say I had MD without a full diagnosis, but she specifically didn't write conversion disorder either. She wrote that I had medically unexplained symptoms and that was fine. At that time, that was a factual statement. The shame I would have once felt at the thought of that information being shared with people I knew, as well as total strangers was gone. Perhaps the anxiety at their reaction still remains though, I'm not sure that will ever leave after the things I've been subjected to.
There have been so many emotions and thoughts over the past week. The initial elation that I finally had answers, a doctor who knew how to help me and could see I'd been pretty poorly treated by Addenbrookes only lasted a day before it faded. It's been replaced by the frustration I feel for the life I handed over to medics, for the person it turned me into and for the way people treat you when you don't fit into a box.
I'm not getting my hopes up that this will change everything. I can't imagine that my doctors at Addenbrookes will change their opinions of me, I am sure I will always face difficulties when it comes to my medical history. But I am hopeful. Hopeful that I won't ever compromise my self the way I have over the past 13 years, hopeful I will learn to ignore other peoples expectations, hopeful that my *friends* will learn to stop passing judgment on me, hopeful I will learn to do the same and hopeful that I will learn to manage my EDS.
Thank you to everyone who's stuck by me for the last 13 years. To all the people who listened without passing judgment, who came to hospital appointments, who held my hand in ICU and who I know will be around for the next 13 years. You're pretty awesome :)