No special treatment - The Emotional Response
These are the things I don't say to my friends, those who care about me, or even my doctors. The details I gloss over, skirt around. Hide. Some things in life are so difficult, so painful and raw that to speak them out loud places an unbearable burden on the listener. This blog is the place to tell the world what 'having a bad day' really means. Practically, physically and emotionally.I may know people eccentric enough to eat cat food for fun, but I could never tell them how close I came. They don't understand. They don't want to understand. And me, I'm too embarrassed. Too proud.
See, I survived being just cold enough and just hungry enough for just long enough to have far too good an idea of what that really means. And how much worse it can get. Until you've stared at a tin of cat food and fully understood why pensioners end up eating such stuff, well, take it from me, you don't want to know that thought process. I'm lucky, sat here in the warm, full of breakfast, my life long since improved from those worse moments. So lucky. Because out there, right now, there are men, women and children too proud and dignified to ever let on how they're existing. Someone needs to.
Grateful as I am for everything I receive I'd really prefer not to need it. Just having to be grateful all the time can be extremely wearying.
I can't say I ever wish not to have Ehlers Danlos Syndrome though. EDS is just one of the many things that go to make up me, I can't imagine life without it; I wouldn't look like me, think or act like me if I did not have EDS. I would not exist, someone else born instead of me.
Saying that, to think about how things could be had I been diagnosed at the right time instead of a lifetime being told I was making everything up and attention seeking is something else entirely and can only take me to a very bad place. The only person that would damage is me. Emotionally that is. Physically its decades too late, the damage is done. To think about all that is a one way trip to being bitter and twisted. With no return. So I don't. I made a very conscious decision that I wouldn't and worked hard to stick to it. I lay in bed one night desperately ill and in pain and came to a realisation. My choices were stark. I could continue to deteriorate physically and emotionally to a point where either I would die or end up in some sort of nursing home. Or I could fight. I fought. Which sounds absurdly easy put just like that.
That was almost four years ago. I'm still fighting. Every day.
A diagnosis of EDS made at the correct time could have given me the opportunity to make appropriate career choices, and in all likelihood still be in full time professional employment now. It would have avoided years of failed, pointless surgeries all of which left me bewildered by my increasing level of disability, and all of which were somehow 'my fault' for not succeeding according to the surgeons who performed them.
It would certainly have avoided putting me through a lifetime of believing those who insisted I was no more than weak and lazy must be right and so further damaging my body by forcing myself to try and carry on regardless. It would have avoided the years of emotional damage which led to my thinking that perhaps I was in fact so mentally unwell that even I did not know it, and therefore must need the 'psychological help' all those highly qualified doctors insisted was the answer to my attention seeking. And then never did refer me for.
It would have avoided the decision I made the night before I was diagnosed. The one I made only after seeing the GP who saw fit to laugh in my face and insist that there was absolutely no way I had EDS, or was even hypermobile. The decision that would have ended my life. Despite knowing with every instinct I had that EDS was indeed the root cause of all my problems. I was so traumatised, so beaten down that I believed that GP. Why on earth wouldn't I? After all, he was just one of many so filled with their own arrogance it was impossible for them to conceive that an attractive, intelligent young woman might just have better things to do with her life than go looking for negative attention from overweight, deeply unattractive middle aged men with wildly overinflated ideas of their own self importance. Something which of course is freely available at a higher quality in any pub throughout the land. How could they possibly admit they just didn't know what was wrong with me? Far easier to instead blame the patient.
It could and should have avoided the high level of physical disability I now have, particularly had it been made early enough in life when I was, despite the underlying condition, managing to stay extremely fit and active.
Like I say. To think about all that is a one way trip to bitter and twisted.
I was determined my experiences should help prevent others having to suffer unnecessarily in the way I have done. When I hear things like Girl, dislocated saying how much this blog helps her, or my GP (the new excellent one) telling me he has correctly diagnosed EDS in several other patients, including a young child in whom he would never have known to look for it or how* if I were not his patient, it goes some way to making me feel better. Whilst at the same time breaking my heart to hear that the 6 year old child whose diagnosis I helped to facilitate is still being dismissed and mistreated by the very same paediatrician who treated me so appallingly when I was a child. Doctors are just as guilty of the 'but you look so normal' as everyone else. Perhaps more so when they of all people should know better.
I don't think about what might happen to me if the government's proposed threats/changes actually materialise. I firmly push it to the back of my mind, burying it as deep as I can so not to be overwhelmed by panic and fear about a situation I can do nothing about. What they (and the Conservatives) either fail or refuse to see is that they have suggested nothing to address the true problem the benefit system is facing. The Can Work Won't Work brigade. That's a bit too difficult, might take real thought, understanding and change. It's far easier to attack the most vulnerable in society and hope the public don't cotton on. Too much.
Instead myself and people just like me up and down the country are scared. The kind of fear that is hard to describe. The type that sits, deep in the pit of your stomach and travels up in to your throat where if you let it it will clench it's fist and take hold starving you of breath.
But now you know.
* Shockingly little is taught about EDS (and the other connective tissue disorders) to medical students. Apart from how rare it supposedly is. The child in question was brought to the GP because the parents could not understand why s/he was so clumsy and falling so frequently. They had no idea their child was experiencing joint problems. Thanks to the knowledge my GP had gained from treating me and the literature provided by the EDNF he thought to perform the very quick initial checks for hypermobility and ask pertinent questions. With any luck not only has a lifetime of emotional pain been avoided for this child, the physical pain and level of disability can be addressed at this early stage, and on a financial level reduce the burden on the welfare state.
4 comments:
I went to give a talk to a fibromylgia group about the merits of counselling recently. Not that they can have it, but if they start shouting they might get heard sooner or later.
But I glibly talked about why they weren't sleeping and I was really pleased after I stopped being defensive to be told that I didn't know what i was talking about. And was told why they don't sleep. Now I'm more informed, and accurately as well, so now I can continue to represent their needs at a higher level in the NHS.
So to read thi is great cause if anyone knows what you go through it's you, and not ignorant or misinformed docs/ nurses/ counsellers or whomever.
pxx
ps, sent you an email
Pixie: TY. I'm glad people like you are able to actually listen and try to represent. BG x
I read this when you posted it, but wasn't up to commenting at the time. I was very moved by your fear about benefit reforms and have blogged about this on the Ouch blog today. I may be very naive, but I think the scary thing is all the nonsense that has been said about this rather than the substance of the reforms.
I also wanted to say something about your gratitude; there really is no need to feel grateful all the time. Every single one of us pays in, and every single one us is entitled to make a claim should the worst happen. You aren't getting special treatment when you receive the support you need.
That having said, we are all very fortunate to live in a society which has a decent, if imperfect, Welfare State.
I'm not saying this to lecture you, but to reassure; like you, I feel very angry about the way some disabled people are left to suffer. I also feel angry on your behalf, that you should be made to feel afraid for your future by a bunch of politicians and investment bankers.
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