So if you are a Consultant and reading this which I doubt very much as most have no interest whatsoever in Ehlers Danlos I suggest you stop reading right now as I am about to vent my spleen big time.
If you are a consultant who reads in their patient list that they are about to see a patient DIAGNOSED with Ehlers Danlos Hypermobility Type (formerly k/a Type III)....
- Please BOTHER to research (even a little) on the condition so that you don't sound like a complete arse.
- If you had done this you would KNOW that patients with the condition have great difficulty with efficacy with local anaesthesia.
- DO NOT laugh with derision at this fact.
- Because of arseholes like you (& I have had the pleasure of meeting two of you in the past week. Patients like me are treated as though they make this fact up.
- It is in fact part of the diagnostic criteria
- AND in actual fact if you bothered you would know that people like me have often suffered unnecessary pain, embarrassment and been labelled as hysterics when administered local anaesthesia.
- It is a medical FACT that we don't respond to local anaesthetic.
- It is not funny.
- It would take a few moments of your time to look up this condition and yes I know its rare and not your speciality.
- This being the case you would be INFORMED when dealing with me that you look stupid when you don't know that for whatever reason it is now called Ehlers Danlos Hypermobility Type (formerly k/a Type III) I am right on this fact not WRONG.
- If you yank the joints of a patient around with EDS it is likely that you will HURT them causing ongoing pain.
- Subluxation and dislocations occur easily. So when you yank my foot around it puts my fucking hip out. Arsehole.
- LISTEN. Its not rocket science.
- It costs nothing to be polite.
- Arrogance is not a fucking virtue.
- If you don't know ASK.
- Just because its not your speciality it does not help the self esteem of the EDS patients to be talked to as though it is a made up condition.
- There is no loss of face to give a few moments of your time to familiarise yourself with the condition.
- When a patient has been DIAGNOSED it is rude to say - that you didn't bother to check for the EDS whilst examining. I would imagine and forgive me here if I am wrong that is because you wouldn't know HOW to anyway.
- I expect a few ehlers danlos patients have gone undiagnosed because they have come to you with symptoms which mimic other conditions. Only to have a letter sent to their GP stating that there is nothing wrong with them.
- This lack of knowledge means no doubt that patients with the condition are left to cope alone labelled as hypochondriac's or hysterics or mad.
- I do not appreciate being talked over, my pain and debilitation referred to as JUST EDS.
- It makes me cry when I get home to be told that the reason I drag my leg is just EDS.
- If you had it or a member of your family had it - you would not be so fucking arrogant to be so fucking flippant. Arsehole.
- I understand it is a rare condition by the way and I get it that you don't give a shit.
- I also get it that you earn a considerable amount of money and if I earned as much as you I would not dare to speak to my 'clients' as though the condition which they have is a nothing in the grand scheme of things.
- I do take it personally when you say in a condensing fashion 'how long have you been unemployed'....
- Perhaps you would like to suggest a job which would be suitable eh matey?
- Perhaps if you had any fucking idea just how debilitating the condition was you wouldn't make such crass and frankly insulting remarks.
- For the record - I have worked but not for some time - why because I have unrelenting pain, daily subluxations,, dislocations plus the rest on a daily basis.
- Along with the condition comes osteoarthritis, osteoporosis and more.
- If you had FUCKING bothered to find this out before I entered the room, you would not have made yourself sound such a patronising, arrogant fucking arsehole.
- Thank you for treating me as a second class citizien.
- People like you are the reason I never ever want to see a Consultant again who has his head stuck so far up his arse.
- For the record I am pleased in your opinion I don't have anything wrong with me and its JUST EDS.
- This must mean that all EDS patients JUST have a great life - its a fucking breeze mate.
- There is no point complaining because you probably wouldn't listen.
- Oh and by the way when someone a mere patient tries politely to explain some of the difficulties encountered with EDS please don't talk over that patient. Its rude.
- Querying diagnosis by the way made by other far more eminent professionals more qualified and so much more dignified in approach than you makes you look silly.
- Oh apologies for swearing its not like me BUT
- Once again I have been undermined by YOU a consultant who doesn't give a shit.
- So where does this leave me
- To crawl back under my rock from whence I came.
- Crying tears of frustration that once again I have had the misfortune to meet an ARSEHOLE like you.
- I have no doubt you shut my case file and sent it back to the archives feeling as though I was wasting your time BUT
- I didn't ASK for this referral by the way
- I do not make a habit of wasting the time and resources of the PCT
- Am I upset
- YES YES YES
- because once again when just like your colleague last week you have treated me as though my condition is of no consequence.
- I will get over this but am I embittered YES
- WHY
- because I have put up with this type of attitude for too long.
- I am a nice person and do not deserve this shit.
- SO MR CONSULTANT if you ever ever see another patient with EDS please don't treat them like you did me.
- I have so much more to say and have only just hit the surface of the way I feel.
- I hope you enjoy your next game of Golf
- I can't play Golf by the way due to my condition.
- Most of the time physically I can accomplish fuck all
- This does not make me unemployed it makes me disabled ARSEHOLE.
- So thanks for nothing you have only served to remind me why I cannot sleep the night before appointments with people like you.
- The nerves I feel at having to explain myself, whilst your eyes glaze over.
- I don't want your pity by the way BUT
- I would appreciate some RESPECT for my condition
- I met one of your colleagues the other day - a dermatologist treating my daughter. She understood so much about the condition. She offered empathy which costs nothing because she knew that it is a fucking horrible condition to have. Nice lady by the way.
- You may say my dragging leg is JUST the EDS but it does not mean that just because in your opinion its not because of any neurological impairment that it is any less debilitating. than a leg dragging for any neurological reason.
- I do not consider myself LUCKY thanks.
- I am FUCKING unlucky frankly to have EDS.
* I wonder whether the reason I was asked about my employment status before anything else is a government directive. I am a fucking housewife, crap at it, my house is a mess if that's what the current criteria on it is. When you said does anyone else in your family 'think' they have something wrong with them and I answered - two have been DIAGNOSED with Juvenile Myoclonic Epilepsy and the other Ehlers Danlos. You raised your eyebrows. Do you think I came to see you because I am a benefit fraudster sir because I am not. I am disabled not with a touch of age related arthritis or a dickey back related to some minor issue I have EHLERS DANLOS.
I hope if you are a GP or a consultant reading this (no doubt you have made up your mind that I am mad so are already off laughing no doubt at my mad ramblings). If you are about to see a patient who may have Ehlers Danlos or is already diagnosed please take a moment before you write potentially litigious untruth's on their medical records).
Please forgive my upset. You see what I am suffering from is mind blowing frustration because whenever I see a medical professional who has no proper knowledge of Ehlers Danlos frankly I want to drink a bottle of Gin. I won't because I am not an alcoholic. Although it wouldn't surprise me frankly if someone like you had written that down surmising that I was drunk when I walked into the table, door or fell over nothing instead of understanding that people with Ehlers Danlos have poor proprioception. Oh but I forgot silly me - I don't have it do I its all just a fucking figment of my imagination.
I was brought up well and told to mind my manners but you didn't so why should I - so frankly if you are one of the ignorant arsehole's I have had the pleasure of seeing this week courtesy of the NHS in the last week.
You can just Fuck Right Off.
I did not come to you expecting you to fill in any forms related to any benefits either. I came because my GP referred me. The only mistake I made was thinking you may know anything at all about Ehlers Danlos.
Physician Heal Thyself.
