I am struggling more than I ever have before with feeling an overwhelming sense of doom just before an appointment with a new/existing medical professional, so the article regarding dignity seems not to have been read by the majority of them.
One would have thought by now that I would be used to the whole remit of responses or not I get along with my condition. That I would have come to terms in my middle age that it is a rare experience to have EDS understood, how frustrating living with constant pain is and the rest. It seems not. For some strange reason I am really bothered latterly with the lack of empathy, understanding & knowledge I receive as a patient.
I have thought about this a lot. Have I turned into the neurotic, hypochondriac I have often been accused of being. Why am I taking everything so personally. At a recent doctor's appointment and I made it a double, two letters were required to be written one to orthotics which was sent, the other to ENT which was not. Now if I were earning over £100,000 per year I would be embarrassed. I think even my GP doesn't care much either & looking back I have received year in year out platitude after platitude. In my current frame of mind please don't suggest I change GP I don't think I have the guts for it anymore.
Perhaps it was better a few years ago before physiotherapy sort of gave up on me. Because back then there was lots of info available to new & existing doctor's about how my muscles don't support my joints and all about my wonky collagen. Then they all decided I was incurable and the system changed and I got too old to be of interest to any of them. They all wrote charming discharge letters etc and wished me on my merry way.
So to the post about 'that' neurologist - click next link if you are interested in reading a previous post about my vitriolic rantings about 'that consultant'! (previous post -physician-heal-thyself- ) who I think sent me spiralling out of control on the whole 'I am misunderstood' scenario. I am thinking of sending the Dignity article (linked at end of post below) to him but then again I don't think he would care.
One of the things that upset me so much in the letter he wrote to my GP included the following statement - ...... there is clear evidence of functional overlay. http://www.ncbi.nlm.nih.gov - functional overlay
There is lots of horrible information on google about functional overlay if you dare go there - if you do and it has ever been written about you be prepared to be upset. I was.
Firstly he was not able to complete a proper neurological assessment as I was wearing splints etc. secondly for half of the examination he was standing behind me (I have a hearing impairment at present) so was unable to respond as I couldn't fucking hear him. Thirdly he knew nothing of Ehlers Danlos. Despite all of the above statements I still can't get over the whole functional overlay stuff.
As explained in a previous post he treated me like a waste on NHS resources. From that appointment and then when I read the letter with the info on about functional overlay (which my GP gave me at the end of last appointment without giving me a chance to read in his office) I have been
If he does I am not entirely what course of action I am going to take if I have the self confidence left to take any at all.
I have been diagnosed with Ehlers Danlos for over twenty years - why now am I in meltdown?
I have long stopped writing positive comments on forums to others with the condition or even participating in them. Apart from blogging & being in contact with the few lovely other bloggers I choose to share my life with. What am I supposed to say to forum users anymore, I never was any good at doing the whole - meeting up with other people with the condition, finding myself too cynical or not friendly enough and really not able to get into the whole happy clappy lets all have a party together. Apart obviously from my daughter whose pain and disability I witness everyday or is she too also deluded and the pain is functional overlay.
I have tried & tried to get past this experience and I can't. I have another appointment in the forthcoming weeks with orthotics and I am not entirely sure I will make it. At some point in the not to near distant future an assessment for an electric wheelchair - you know for the pain that I am exaggerating. Perhaps all they will also be able to assess me as someone who thinks they had a pain which has now gone away and I am unable to let go of. Don't be surprised if I cancel these appointments. Which will leave me probably housebound completely in the not too distant future.
Do you know what pisses me off the most is that I wouldn't wish this pain on anyone, so to be accused of wanting it to carry on for psychological reason is insulting.
If you are going to comment and write - don't worry he was just an arsehole. With all due respect please don't. Yes he is an arsehole but this arsehole's letters are for ever on my medical record.
So if I could swop this condition with one that meant I was treated with respect I would. To those of you out there with a condition that is well known please don't think I would dream of belittling either the symptoms or their impact. I am just plain worn out of being labelled something I am not. I am not fucking mad, I am not imagining my pain I have Ehlers Danlos. If 'that' man and all the rest of the medical professionals could live in the body or mind for 24 hours of someone with Ehlers Danlos they would be ashamed at how at the drop of a hat so to speak - they have ruined my life.
The Ehlers Danlos hasn't - I came to terms with having it a long time ago. Being taken seriously and being treated with respect I imagine never.
Oh & whilst I am having a moan - I am told I have to go to a family 'do' tomorrow. Despite the fact that my OH gets the fact I hurt big time - why does he say yes to stuff without checking I am up to going. So tomorrow when I tell him - he can go along with grandson - I will no doubt be letting him down. Do you know what these days I am past caring. He can trade me in for a better model for all I care.
If you think I am depressed you are wrong by the way - I can understand why you may think so because of the negative post but in truth I am a pretty happy person - I just don't like the way I am treated. I think its called justifiable anger.
Dignity - with ehlers danlos - no fucking dignity that's what.
www.ncbi.nlm.nih.gov - Survey results Dignity with EDS!
5 comments:
Giant gentle hugs. You definitely need some of those right now.
xx
I know where you are coming from.
Achelois
My heart goes out to you.
It's clear to me that what you're searching for in your dealings with the medical profession, is acknowledgement of your pain and disability.
How do I know this? Because I've been lucky enough to receive understanding and compassion and I know the difference it makes having had years of misunderstanding in the past.
As you well know, EDS does not fit neatly into any diagnostic 'box' and therefore the medical profession has a tendency to ridicule it rather than to educate themselves more about it.
What you need more than anything else at the moment, is UNDERSTANDING.
You need understanding of where you're at and what can be done to help you. Your GP should be able to provide this.
I think your plan to go back to your GP for a frank discussion, is a good one. You need him onside in order to progress with sorting out your other difficulties.
In the meantime, I want to tell you that I admire you greatly for your fighting spirit. Believe me when I say, that one day you will gain the respect you truly deserve.
Never give up believing in yourself!
Steph's said it best, so just more hugs from me. BG Xx
OMG, I have never heard of 'functional overlay' and I think my former neuro probably has a 'dysfunctional overlay'... OMG this pisses me off.
How dare he... ohhhh, how dare he. I wish we could gather up our energy and storm any doctor who suggests 'functional overlay' (WTF?) as a diagnosis. OMG...
Want to come over for virtual tea and gentle hugs? I think we should share a few gallons...
I wish I could do more.
I should move on I know, just struggling a bit with this one. Funnily enough after I wrote the post I returned to a forum I have not used for so long and it helped that night if only by way of distraction. I hope that doesn't sound awful.
Thank you all of you for your lovely kind comments.
Steph - thank you.
Have Myelin as always we get annoyed on behalf of 'that' treatment we seem to get. Yes I would like the virtual tea etc. again!
If anyone had told me my bloggy people would help me so much to hang on to my sanity through the bad times a year ago I would never have believed it.
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