I can't bear it.
My beautiful daughter spoke with me today. She is finding coping with EDS really really really hard. I am so so angry with our gp of 20 plus years. She finally went to him with a form asking for support for her application for a disabled parking badge. At the same time he increased her prescription for Tramadol and said hydrotherapy would help her relax. RELAX - I am so effing angry. I thought these days accessibility for the disabled was important - so he obviously cares nothing that when she finishes an afternoon's work she walks painfully and shedding tears because of it. The car park on a dark, cold winter's evening may as well be Everest. She arrived home and collapsed after taking an hour to walk the distance that an able bodied person would take approximately 10 minutes. Tears of pain and frustration, legs of jelly, neck bent, stuck, burning nerve pain, a kneecap sideways, limping so heavily, muscles shuddering with spasms so severe its visible to the naked eye, there's more but I can't type it for tears - she is 19 years old.
I hate him for this denial. This parking permit would mean so so so much. Bastard - he has let the family down. I want to make an appointment to say how I feel. Other half feels I should let it go. Any ideas on whether I should make this appointment?
She fights the EDS with tenacity and I am proud. So for her to ask for this is a big deal. He refused on the grounds that he didn't think it was time to go down 'that route' and that the rules have changed and because she can walk more than 50 metres she does not qualify. I am completely incensed with him. I thought he understood. She is already down 'that route' in terms of disability actually. Its just plain wrong frankly - I want her to apply and appeal agaisnt his lack of support - she says she has run out of fight. We will ask the Professor in January. Why such a rigid rule - I parked behind an eighty year old last week who told her friend that she had lied about the pain in her hip to get her badge. She sauntered off down the road in glee.
She says would it be better if she just gave up, got in a wheelchair and never got back out. Her EDS is so bad this may happen anyway. Because she fights, he has in a single appointment made life really really really much harder for her than it already is. I feel stupid because she asked my opinion and I was so sure he would be supportive.
It just goes to show that one can never ever trust medical professionals to do the right thing. In one moment he denied her something that would actually make so much difference. She already misses out on so much - her uni friends are out clubbing. She is too tired and in too much pain to participate on the fun side of uni. She cried today and talked - she is an intelligent, articulate young woman and stated that she is realising she is so debilitated by this condition that the reality of ever being able to work and use her degree if she manages to complete it because she is surrounded by people because of their stupid effing rules make everyday life so much harder for her. She said she feels like a very old woman.
I want to take her in my arms and tell her everything will be allright. It won't though will it. Ehlers Danlos is a cruel condition but the system that denies a young woman fighting every step of the way something as simple as a disabled parking permit is the cruelist by far.
I want to cry but I can't for my heart has turned to stone.
Today I hate EDS, I hate myself for passing it on, I hate to see my daughter treated so unfairly.
To our Gp - thanks for absolutely nothing.
* To those who say why doesn't she apply for dla - she is too scared of a system that she has seen me fight through to even go there. It looks like the gp who I had thought understood wouldn't even support the application anyway should she change her mind. If she could pluck up the courage to apply I have no doubt she would qualify for the disabled parking permit on the mobility component.
13 comments:
Oh it makes me so angry for her. Grrrr! I dumped my GP, who because I didn't have genetic 'proof' (aka a blood test) still didn't truly believe I had EDS.
Medical professionals seem to think they're god. Just because someone *can* walk 50m, doesn't mean that same person *should* walk 50m!
Would your daughter be interested in starting a blog?
I'm so sorry to hear that your daughter is having a hard time. I find the only thing the GPs are good for is to prescribe pain meds... and most people with EDS don't seem to be affected by pain meds enough to even take them.
I wish your daughter and you the best of luck.
*hugs*
I feel your anger. I know some people ask for a permit as soon as they have a sniffle but for the majority of us it's a huge decision to ask. It's finally accepting that you are different, that your life has reached a point where you can't function like others your age, that you are ill. To have such a dismissal I think she was very restrained to not thump him. I don't think many gps get the idea that that little sign in the window of your car may mean that when you get home you can have the energy to make tea rather than just collapse in bed, that you can last through a uni class rather than have to not go. Those extra steps can take up all your physical and mental energy that could be used to have a small slice of life. Its all about access to life and she deserves that.
As a mum I know my first instinct would be to run to the gp and tell him what for but most gps don't take that well. I know it can be hard to advocate for yourself when you are ill so maybe you could go back with her and explain the situation and the impact of not having the permit.
I hope you can find a gp that understands better for both of you. :)
definitely... find a different gp if you can. sounds like this one's not going to make any decisions you can count on, ever again.
i always say go back. go back and talk to superiors, if possible. with medical journal articles.
i haven't read this one, myself, but it seems pertinent; it's called, "Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome". if you can't get the full .pdf and you'd like it, let me know:
http://informahealthcare.com/doi/abs/10.3109/09638280903178407
i've been through so many doctors in the past few years i don't even want to count them. i've gotten to the point where i have to politely tell the stupid one's they're stupid and move on (usually just by making them rephrase statements to leave room for actual truth when they're talking like they know everything).
finally, i second veronica, i started my blog to get this stuff out of my system and into a forum where it might be able to help someone, anyone. it's amazing to have people who understand comment back on your posts. maybe she would like that?
good luck to her, i'll stay tuned in.
Thank you all. I don't think she would blog at the moment. She may in time. I am going to go to the gp to discuss the impact of this but I need to calm myself - angry mad mum's come across as overbearing and interfering sometimes I think and that is a fear of mine! For this I need to be cool, calm and collected. I read my post back and realised I am really very angry indeed!
its a time when you want to pull your hair out. why when there are plenty of people that abuse the system wont they let your daughter a badge?
i left mine for a while before i applied, simply because i didnt want a wheel chair, if i could park outside shops i would be able to make it in. it was the one time the gp helped me. i got the badge, and was still embarrassed to use it. yet now i feel able to cause im in the chair, see how messed up my head is! all because of what other people think.
i really would persue this. if ive learnt anything of the past three years, theres usually a 'no' at the first hurdle, you just have to persist. good luck.xxx
I hear you. The way our local country doctor dismisses Veronica's EDS makes my blood boil. I would definately go and see him. but wait until your anger has cooled a bit.
I could go on and on. But I will just say I understand.Bloody doctors, bloody EDS.
I would say skip the GP and go directly to an orthopedic surgeon. Our ortho guy does a very thorough workup on Lainy and her degree of flexibility and what current issues she has that need addressing. Luckily for us, her shoulder surgery is holding well and her hips, well, we'll have to wait that one out till she's in college and she how we're going to make do then. So if you can get to an Orthopedic doctor, get there soon! They have a much better grasp of this condition than any other type of physician.
Achelois
I'm so sorry to read of this.
As your GP won't support your daughter's application, you could perhaps get the Professor to support the application in January? Failing that, maybe he would be prepared to write to your GP requesting that he supports the application?
It's been my experience with EDS that docs don't give it credo until circumstances force them to.
It's terribly important that a relationship with any doctor is based on trust. If you lose that, it's time to change doc. I think a calm, rational chat with your GP would help you to understand better where he's coming from. If you still don't like what you hear after that, then you've little to lose in moving on.
I am so sorry. I feel your anger. I don't know what to say right now.
When I do I will be back.
Oh what a nightmare. I personally would wait until I was calm enough then go to see the GP with daughter and explain exactly the difficulties she's experiencing. One of the big problems with us bendies is the combination of 'looking well' and our desire to down play symptoms and just get on with things. I think this often leaves doctors with a false picture...but it's a false picture we've helped to draw for them.
If that doesn't work, change GP's. Often all that's needed is a fresh perspective. Regarding DLA, I understand her fears, but perhaps with the assumption she won't get it she should go ahead and apply? Although the process is awful and stressful, the majority of those bendies I know with enough disability to actually qualify (as we all know plenty are taking the p!) have had their awards without having to appeal etc.
Best of luck to you both, thinking of you and sending lots of love BG Xx
I agree with the cries of "Find a new GP!"
I went in, at 18, to my rheumatologist with the paperwork for my permit. He knew that though I could walk the specified distance, it didn't meant that it didn't take a great effort and cause immense pain to do so.
Please, tell your daughter to make this clear to the GP. She has every right to be vocal and angry, and really should express this to him. I know it takes a lot of courage to stand up to a medical "professional" but the patient knows more about what she can and cannot do than he does.
I came by to tell you Merry Christmas to you and your family.
Post a Comment