to resent the kind doctor in Fracture clinic

[cory]

for telling my dd how lucky she is to have her medical condition as it means her skin will look nice when she's in her forties . Oh yeah- like an 11yo with a broken foot, severe chronic pain, sudden unpredictable muscle spasms and incontinence is really going to care about what her skin will look like when she's forty!!! At that age they can't even conceive of themselves as ever being forty! Besides, I'm in my forties and I wouldn't swap my body for hers.

In fact, I'm angry with the whole blooming lot of them because every time we have to see a doctor, they tell her that she's lucky to be hypermobile, just like David Beckham (always scores for England from his wheelchair, doesn't he?) or some famous ballerina (IME, they can usually walk, can't they?).

As a parent, you can't say a thing, because then you will get labelled as not supporting your child and not helping her to cope. (been there, done that, got the T-shirt). So you just smile through gritted teeth: -Well, isn't that lovely, dear? Perfect skin when you're forty, isn't that something to look forward to, darling?

The problem is, when somebody is struggling through a lot of pain to cope with everday life, this trivialisation of their experience really undermines their confidence. Dd cried afterwards and said: 'I felt I was being brave and coping really well, and now I don't'.

I do understand that the doctors want to help, I do honestly, but is it too much to expect them to ask the patient how their situation is, rather than telling her. She's lived with it all her life, they look it up in a book. And they clearly don't read her medical files, or they'd realise the difference between her and Darcey Bussell.

What can I do? Except take her for a calorific and teeth-rotting tea at the hospital cafeteria and roundly abuse all doctors. Which I did. We've agreed to push little brother through medical school, he may have contributed to the present accident, but he wouldn't say b-y stupid things like that. Why can't there be more men like him in the medical profession.

Message withdrawn

not in your position, dont know any thing about the condition but am in the medical profession.
Sometimes i cringe at what people say.
Some times i think to myself, that what that Dr said was so so lovely, so understanding and so kind that i MUST remember that and steal it for myself as i couldnt have put it better myself.
So many personalities, so many different perspectives. Not helpful to you, but there is no way around it. You just have to grin and bear it.
Occassionally a Dr will ask me "how did that sound, was it ok?" and i always tell the truth, either, no, sorry but it wasnt the best ive heard or yep, was ok. (never ever boost an ego me)
We have to communicate awful facts and i dont think that they have any training on effective communication you know.
its wrong and its a shame, but even with training many of them will still be crap you know!

YANBU. Is it worth taking it up with your local PALS just as constructive feedback? If he's genuinely lovely he might well appreciate the guidance on what to say.

Oh Cory, I do sympathise! I have hypermobility syndrome though not, given what you describe, as severe as your dd. In my view, she sounds very brave indeed, so I hope this silly comment hasn't knocked her confidence too much. IME, most doctors just don't know enough - or anything at all! - about this syndrome, but while some see it as a chance to ask some sensible questions, some seem to abandon all common sense: such as the GP who asked me "so, does that mean you can bend your elbows and knees backwards?'
Me: "Yes."
GP: "Go on, then!"
Me: "Er, it really hurts. So, no."

I too have had all the daft comments about how athletic/acrobatic I must be, from doctors who apparently aren't capable of distinguishing between hypermobility as double-jointedness, and the more serious complications and chronic pain of the syndrome. Perhaps your fracture doctor was trying to offer a (marginally!) more realistic upside to your dd? But yes, misjudged.

An aside - I do hope your dd is getting good support for this. I have been in constant (as in every single day) pain since the age of 11/12, but wasn't diagnosed until I was in my mid-20s . Since then, I've had lots of positive treatment alongside the crass comments but I know it can be hard to come by, and very dependent on where you are in the country.

Good luck to your dd - it's terribly hard and draining to be in pain, but hopefully she's already aware of how very much more knowledgable she is than most of the doctors she sees.

Thanks for the supportive messages, folks! Feeling a bit better now. I know we'll get over it and she is tough, it just seemed such a shame, as she's been making a lot of progress lately.
Her problem is, she's been so well brought up by her (unthinking) mother that she finds it really hard to contradict adult strangers.
I offered to make her some laminated cards that she could just hold up to the next medic, so she doesn't have to say anything, but she says she'd rather put up with foolish remarks than trust herself to any cards composed by me. Possibly wise . Doesn't really help to rub the medical profession up the wrong way. Still haven't forgotten the time we got suspected of sexual abuse (obviously, a child that doesn't have broken bones can't be in pain...and obviously, a child that isn't in pain but thinks she is must have suffered some deep trauma to have reached this level of confusion...so logically it would follow that any child I cannot diagnose must have been sexually abused...)

Cory, am on your behalf for abuse accusations - how awful for you all. Hope your dd has better luck with medics in the future; fingers crossed for you

yanbu x

I can understand completely how you feel and you are absolutely not being unreasonable. I have Ehlers-Danlos Syndrome (hypermobility type) and it took me until my early thirties to get a diagnosis, despite all the indicators. I've had doctors who've said - "You have what?" to others who've been completely dismissive of it. It's very hard to explain to someone the non-stop deep joint-ache that can come with hypermobility, especially when no evidence of it shows in an x-ray. I'm extremely lucky that I had an excellent GP who fought to get me to see a specialist in London who diagnosed me and now I get the treatment and help I need.

Good luck - I have no advice to offer, except perhaps to say that there are sympathetic doctors out there who do understand the condition and who are prepared to go the extra mile to help - I hope you meet more of that type in the future!

That's terrible. It's true that most doctors practising today didn't have any training in communication skills - and that applies to most of the ones teaching today's medical students.

If you can be bothered, you could always write to the British Medical Journal, saying what you've said here. Or I think they used to have a 1/4 page where a patient could tell their story. www.bmj.com should find it.

Equally, you could always write a polite letter to the hospital...

YANBU. I've had to suffer with that kind of ridiculous comment my whole life. Hugs and sympathy for your DD.

btw - have you come across www.hypermobility.org?

Emma (EDS-HM too)

Hi Sanguine, am linking your thread here to this one for you. Hope that's ok

Hi Cory, of course YANBU.

My dd's got Marfan Syndrome, and even though she's only 5 she is already getting stupid comments like "oooh, you're going to be lovely and tall, aren't you?"

Yes, there's every chance that she'll be over 6 feet tall. She'll also have a whole bunch of other problems to go with it, like your dd.

Hope you don't mind me asking what the doctor meant about her skin?

People with EDS or Hypermobility Syndrome often have very fine and delicate skin with a velvety texture which ages well - lots of collagen so fewer wrinkles, no stretch marks during pregnancy etc etc.

yanbu
very not
at least he didn't say it was a "shame" or say bless.
Prat

Sanguine, you know me from the hypermobility forum under another name- I've been there and stomped and fumed over this one, too.

Perversely, we are now both of us feeling a little better because she's been in hospital for a knee operation, which isn't something that can be trivialised in the same way. It's an incontrovertible fact. (Well, so is Hypermobility Syndrome, really- but they don't know that.)

So she's had 3 days in hosital being treated in a matter-of-fact way, made to work very hard and push against the pain, but not doubted and not patronised. It's done her a world of good. Not that we'd want it every week

Thanks for support, everybody.

YANBU BUT I think it's quite nice for a doctor to say anything (and I think he was trying to be kind) and not patronise you all into the middle of next week.
My GP does not even believe Hypermobility Syndrome exists, thank God the pain clinic does though!
I suppose he was trying to find something positive to say although he did it very badly.

yanbu - my sister has eds-hm, and for years has had to put up with stupid bl00dy comments from supposed professionals

and Cory ... I know where you're coming from on the abuse allegations - my sister and I were on the "at risk" register as children because of my sister's (then undiagnosed) eds ... how my mum coped I'll never know!