Why the medical horror stories are so common

If you (or a loved one) have been diagnosed with an eating disorder, the medical horror stories are almost inevitable. I'm not necessarily talking about the harrowing close calls with death. I'm talking about the idiocy that only someone with a medical degree can command.

Some of my personal favorites:

"You can't be anorexic- you're not wearing enough clothes!"
"So your mother was pretty controlling, huh?" (Psychology PhD)
"You don't have anorexia- you just have a thyroid problem." (I was less than 70% IBW at this point)
"Aren't you a little old for this nonsense?"
"I wish I had your problem!"

And a study out of the UK looking at how physicians' attitudes affect their treatment of ED patients has just quantified the degree of ignorance on eating disorders by GPs (or PCPs in the US). While virtually everyone knew that weight loss was a cardinal feature of anorexia--pat yourselves on the back for a job well done!--far fewer understood the other, equally important, features of anorexia. Over half of all GPs thought the diagnostic criteria for AN meant a BMI of 16.0 or lower, but less than 40% knew to look for amenorrhea.

Basically all of the GPs knew about the possible complications of osteoporosis, and to test for hyponatremia and hypokalemia with vomiting/laxative abuse. But fewer than half knew about the cerebral and neuromuscular changes that accompanied AN, and only one-third knew about the possibilities of delayed gastric emptying for both AN and BN. Furthermore, most GPs overestimated the prevalence of AN but underestimated the prevalence of BN.

The utter shocker? Only one-third would refer to a specialist eating disorder service. Okay, yes, this is the UK and I'm not super familiar with the ins and outs of the system. What disturbs me isn't just the lack of knowledge from the GPs; it's that they think they are, in fact, knowledgeable.

The majority of GPs agreed with these two statements:

Patients with this condition are largely responsible for their own condition.
Patients can do a lot to control these symptoms.

Though anyone who has lived with an eating disordered person can testify to the fact that their behaviors are very much out of the sufferer's control. Hence the name disorder.

Yet none of the attitudes about eating disorders were correlated whatsoever with the knowledge about these conditions. The study's authors pointed out that this could be good, because a lack of knowledge didn't result in stigma. But if this means that patients are being left to fend for themselves not just because of a lack of resources but because the GP things the patient really can handle it herself, then this might not be such a good thing.

This study really just left me feeling astonished that these ignorant comments and general idiocy from medical professionals really wasn't more common. Sigh.

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susiebelle said...

This doesn't suprise me. The lack of information and education surrounding eating disorders in the UK is awful, unless you speak to someone who specialises in the field.

I was fortunate that my GP was willing to refer me to the specialist nurse and it was infact my Psychiatrist (who i'd been seeing for depression) who didn't acknowledge the anorexia and told me i was "knowledgeable enough about food" and therefore didn't need to see a dietician.

My GP has a special interest in Addiction (mainly drugs i think) which i think probably gives her a better knowledge regarding self harm and eating disorders.

GP's can be a great source of support and a good starting block but sadly it is often the case that to get further, more specialised help and after that it's down to the place you are refered to.

Great Article though.



Lola Snow said...

This is a great article, and sadly the ignorance is not just limited to GP's. I've had recent battles with the Community mental Healthcare Team which also flagged up a number of common misconceptions about ED's and their effects on mood and personality. I did feel that I wasted an hour of my life being spoken to like a naughty child, not an adult with an opinion, and a fear of change very common for an anorexic.

Lola x

JJ said...

A doctor actually said they wished they had your problem? wow... It actually freaks me out alot that there's so many doctors that are THAT uninformed!

KimT said...

Physicians in the U.S. probably have the same problem. When my daughter (at 12) began her eating disorder, after a battery of tests were negative, her pediatrician told her to eat protein as a snack. When my daughter was 24 (just before she was admitted for treatment for her eating disorder), the doctor told her to "just eat more."
Thank you for your insightful article.

Anonymous said...

"What disturbs me isn't just the lack of knowledge from the GPs; it's that they think they are, in fact, knowledgeable."
That's fairly typical of GPs in most fields if you ask me!

To be fair to GPs (who can be lovely and who don't have two heads, even if the one head they have may be somewhat bigger than it should be) it is very often impossible for them to refer patients to specialist services even if they think they should because the specialist services just aren't there. Even in cases where there IS a local ED service, demand may be so great that only patients at low weights can be seen. In our locality, although things are getting a little better rather slowly, GPs are NOT ALLOWED to refer direct to the specialist service but must refer though the generalist mental health triage system leading at best to delays in getting to specialist care and at worst to their being "treated" by clinicians with absolutely no knowledge of eating disorders. As Susiebelle and Lola have said, non-specialist mental health professionals can be even more ignorant than general practitioners about EDs.

Examples of stupid things said by professionals

By a GP about a patient suffering from hypophosphatemia "I'm not giving her any more blood tests until she pulls herself together" (luckily his colleagues took no notice and gave her them anyway)

By a consultant general psychiatrist in a heavy foreign accent when offering NO support for eating to a frightened anorexic patient "The eating disorder is about control"

By a generalist mental health patient to a sufferer who went voluntarily for assessment because she was so afraid that she would die before her daughter's 18th birthday "I think this is all about your parents' divorce and until you face up to your feelings about your step-father (which the woman doesn't think she has in particular, he's just a regular guy who happens to be married to her mother) you won't get anywhere"

To the shy daughter of the gentlest gentleman on earth on admission to a specialist unit (admittedly some years ago) "We generally find that anorexics have been abused by their fathers"

Want any more?!

Actually one of the most helpful things I've heard from a generalist was from one of the general mental health triage nurses to whom all cases of EDs have to be referred round here- in heavy Scottish accent "I canna get my heed round them" - that guy simply arranges a join assessment with the specialist service straight away - saves so much time and misinterpretation.

Lisa said...

Oh man. I just got a new computer and now there's head-explody all over it.

Thank you for sharing this. I wish I had access to the full article, because I'm curious as to how they chose the sample.

Every day I'm reminded that I had a truly exceptional team helping me.

Susie said...

I certainly agree with Lisa there. It really does make you appreciate good/great support when you get/find it.


marcella said...

Ah - the blessed British GP. I'd love to get hold of the full article, but even if I did, I suspect it is fairly optimistic at least in its calculation of the self-presumed knowledge of the average GP because it is self-reported, and it's very difficult to get a GP to self-report on a subject that he or she doesn't have a special interest in.
If any readers here are British and want to give in horror stories about their first encounter with their GP, then BEAT are asking for them http://www.b-eat.co.uk/Home - "Urgent request from BEAT". This may be at least partly a result of this study, and YES, I'm sure they'll get loads of them - but ONLY asking for the negatives is surely well, um, a bit negative isn't it, and only likely to put the profession's collective back up which, since the GP HAS to be the first port of call in almost all cases of EDs in order to get a referral (usually even to private clinics) might be a mistake, yes?

Minh said...

Thanks for your article. I would also like to suggest another website with lots more information about eating disorders as well as addictions. http://www.lifeworkscommunity.com

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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