Doctors, ignorance, and eating disorders

There was an interesting thread I found on a discussion board that was discussing why medical professionals were so obviously not clued in about eating disorders. There are issues of insurance companies (in the US) and national healthcare rules (in Canada, the UK, etc), but that's not exactly what I'm getting at. It's that most medical professionals just don't get it--even, occasionally, those that say they "specialize" in eating disorders.

I can think of several reasons this might be:

1. Ignorance. Some doctors really truly don't have a clue. The more dangerous (and common) situation is where the doctors think they have a clue, but they really don't. We can break this down even further: there are those medical professionals who have no idea that they're out of their league and there are those won't admit that they're out of their league.

It's interesting, because I really respect a doctor who can say "You know, this really isn't my area of expertise, but let me find someone who can help you better." I'm guessing it's hard for someone (a doctor in particular) to admit they don't know everything, but I can tell you that I respect you more because of it.

2. Powerlessness. Many things that GPs and PCPs are trained to treat basically involve telling a patient what to do or giving them some medicine, and then the problem is solved. Even when other chronic conditions aren't quite this straightforward, there's an obvious path to take. First you do A, then you try B, then C. So some doctors will do the old "have a sandwich" routine because it's the kind of thing that works with other illnesses.

But the problem with an eating disorder isn't actually eating the sandwich. It's getting yourself to eat (and digest) the sandwich. Not that EDs aren't frequently accompanied by GI issues, but I can guarantee you that most ED patients have thought about eating a sandwich. It's the fears of what might happen if I eat that sandwich that get most patients, and I don't think that's really understood.

The other thing that I don't think many doctors realize is that EDs really aren't like other illnesses. The reason why?

3. Wrong assumptions. When someone gets sick, they usually want to get better. The problem with eating disorders is two-fold: many patients don't recognize there is a problem. And when they do, there are often serious issues with the follow-through. Sometimes motivation fades. Sometimes you're just lying to get the hell out of the office. Sometimes the patient underestimates just how hard it's going to be. Or they don't grasp the depth of the problem ("My eating disorder really isn't that big of a deal.") Most medical professionals don't get this. They don't understand why someone would engage in ED symptoms. So they assume that you're ready and willing to stop--which isn't always the case.

4. They take the patient's lead. This isn't always a bad thing. I think it's good for doctors to take a patient's lead on interaction style, what types of treatments work best, that sort of thing. But when a patient really isn't all that distressed by something that is killing them, the doctors often figure that it must not be that serious.

(I've had this problem with depression simply because I'm not overly demonstrative of my emotions, and I have a very dark sense of humor anyway. So I can be severely depressed and making smart ass remarks...only I really do mean them.)

5. The media. Mostly when you see EDs in the media, you see the most extreme cases. So when someone comes into your office whose weight isn't as low as that chick on TV last night, or who doesn't binge and purge as frequently, it's much easier (though no less irresponsible and stupid) to write that patient off.

6. Over- and under-reliance on labs. Many people with eating disorders can be severely ill and still have normal labs. On the other hand, people can look rather healthy and have totally whacked out labs. But since their weight isn't really low, it can't be that bad. If their weight is low, but their labs are normal, then they're not that sick.

7. Over-reliance on weight. This one pretty much explains itself.

8. Obesity hysteria. When all the messages you hear are to make sure that your patients aren't too fat, you're probably not looking to see if some of them are too thin. A doctor frequently encourages someone's weight loss efforts because they're thinking "At last! Someone I don't have to lecture about Cheetohs!" Or they overlook weight loss in a growing child because they're not yet "underweight" even though the weight loss is dramatic, marked, and takes the person off their growth curve.

9. They just don't want to deal with it. I'll be the first to admit that I'm probably not the easiest patient to have, especially when I was ill. I'd skip appointments or show up and deliberately blow off your advice. I wasn't aware that I had a problem, and then a crisis would arise and all hell would break loose. I don't envy my doctors and therapists, which is one of the most obvious reason why I don't want to be a doctor/therapist myself. But tough patients come with the territory. It's part of the game, and it's someone's life that you're gambling with.

Why do you think so many medical professionals just don't get it? Share in the comments, but I ask that this not become a comparison to see who was the sickest. You don't need to say how many times a day your purged, or what your weight/BMI was. That's not the point. What I'm curious to see is what have your experiences taught you about why so many doctors are so clueless about eating disorders.


hm said...

Went to one psychiatrist for help with panic attacks and anxiety- gave a semi-confession about not eating- he told me to go ahead and not eat if it made me feel better- that I was smart enough to know when enough was enough and wouldn't put myself in danger. What a huge relief! My first confession after hiding an ED for almost 10 years- and I was not only forgiven but encouraged to continue. Hmmm. I held onto that for another decade- putting myself in danger on and off the whole time. Then saw a REAL therapist who took an opposite stance, and am finally finding that recovery is a possibility for me. My guess would be that the first one simply believed what he WANTED to believe, what made him feel comfortable. She'll be ok- nothing wrong there. An ED client is more than happy to agree and to further such impressions- the ED lies to us and we tell those lies to our professionals. The biggest problem then, I guess, is that they are GULLIBLE! Our ED lies, and they believe it. Whose fault is that? Hard to say.

Kim said...

This is an EXCELLENT post. Almost every doctor I've seen has one more more of these issues. The biggest one that stands out to me is the doctor not understanding the severity because the patient doesn't seem to think it's a big deal. Doctors are great for all the obvious reasons, but I've found they're pretty dumb when it comes to mental health issues. And, well, I don't think they see eating disorders as mental health issues that clearly. It's a shame.

Anonymous said...

Great post, Carrie! I think you hit on some good points.

Here is a thought:

Stigma: I think that some GP's stigmatize patients with mental health issues, which is incredibly disheartening and unfortunate when you are trying to ask for help. I have also met a lot of nurses in my own experience who have said some pretty ignorant and upsetting things to me. It really doesn't help when you are in the hospital and the so called 'professionals' say such things

Now if we could only direct our doctors to your post! ;)

tset said...

5 gets me every time. sometimes i want to talk to someone about it but i'm scared they'll think i'm okay..that what i do (&don't do) isn't a big deal cause i can't see the bones in my chest yet. guess i should suck it up. thanks for posting. kudos to you for hanging in there, babygirl.


Nicole said...

I had a doctor once who was so stuck on my race he failed to even think about my eating disorder. I actually just posted a topic on it yesterday.

Thanks Carrie, love your blog!

Cathy (UK) said...

I would add that there are some professionals (in the field of EDs) who don't 'get' EDs (or some EDs) either!

In the past I was referred to some therapists who left me feeling more helpless, hopeless and misunderstood than I had felt before I talked to them. The worst was a female clinical psychologist (whose name I won't, of course, mention) who had chosen a career as an ED therapist because she, herself, had had an ED in the past. The problem was that she seemed to be very biased and to assume that everybody's ED would be the same as hers was. She failed 'big time' as a good therapist because: (1) she didn't listen to clients specific, individual problems - and (2) she didn't recognise that everyone is an INDIVIDUAL, and that our individuality influences the personal meaning of our ED to us and the cognitive distortions.

I'll also add another point to your list of why professionals may show ignorance: THE MEDIA.

The common media representation and public perception of EDs confuses these illnesses with 'size zero', skinny models, 'celebs' and other fashion trends. THE MEDIA DOES NOT CAUSE EATING DISORDERS! The media may facilitate the development of EDs in vulnerable people and make recovery feel more difficult, but we are not 'victims' of cultural trends. Rather, we are 'victims' of our own neurophysiology (and how that alters with food restriction, the hormonal changes of puberty etc.), personality, and sometimes traumatic triggers that deeply affect our sense of self and self-esteem.

When there is a dominant media discourse of EDs being associated with fashion and skinny celebrities/models this inevitably dampens down the seriousness of these illnesses. And, of course, the ridiculous 'pro-ana' movement does nothing to help anyone understand that EDs are illnesses and not lifestyle choices. Moreover, the media representation of EDs influences an individual's personal narrative, so if they go to see a professional clutching fashion magazines and claiming that the photos of thin models 'trigger' them, then a less skilled professional may not recognise that what they are seeing is a SYMPTOM rather than a CAUSE of an ED.

Anonymous said...

I also went to a psychiatrist for help with panic attacks and anxiety. I was referred there by my GP after persuading her that the root cause of my seriously low weight was anxiety. I too gave a semi-confession about not eating but the GP and psychiatrist were far too gullible and I couldn't help but feel (at the time) proud of myself for being able to escape the (percieved) trap of being labelled with an ED. Plus, having seen a doctor it put an end to the constant nagging from my mum to see someone about it (I can't began to imagine how disappointed she must have been when I returned smiling, telling her I was going to be seeing someone to help cope with anxiety stuff related to university pressures). I attended the appointments only to shove off what he said to me and to prolong my illness. At least now I'm in the hands of a true perfessional, I have learnt honesty is the only way doctors are able to help. As pateints are fooled by their ED beliefs it's not hard to see why GPs fall for it too. GPs are in a difficult situation-they can't exactly turn round and say to the patient "your lying" for fear of loosing their job.
It's a very tricky situation and hopefully as more specalist become trained help will be available to all those who need it, but as yet we are a long way from this.

Katie said...

I would add to point number three that this is true of most mental illnesses. My first long term boyfriend had severe bipolar disorder, and medication was absolutely essential to stop him from becoming manic/psychotic. He and the friends he'd met in hospital showed a hell of a lot of the same thought processes as people with eating disorders in regards to their illness. My boyfriend often stated that he wanted to cut down on his meds a little, or that he thought if he was careful he could make himself a bit hypomanic but somehow avoid tipping over into full blown mania/depression. He didn't trust his doctors very much, didn't really believe that he was ill, and he hated the side effects of his medication. He would blame all of his problems on his medication, in a similar way to how anorexics in recovery blame their anxiety on weight gain rather than facing the fact that it is the illness, not the cure, that's causing the problems. My boyfriend and his friends would romanticise their illness, remember all the fun parts and blank out the crises. It was so reminiscent of the way that myself and my friends had thought about eating disorders - we thought we could just lose a little weight, we could control the illness so we could be numb and 'in control' but avoid going too far or getting sick, etc etc. That was actually the first thing that got me thinking that anorexia was an illness like any other rather than a quirky coping mechanism of mine. Since then I've been looking out for things like this and I've noticed those thought processes in people with all sorts of mental illnesses. Even those with crippling depression or anxiety might see some 'benefit' - I know when I was really honest with myself I realised that I found being at rock bottom with my depression weirdly comforting, because I couldn't be disappointed or hurt when I was already suicidal and couldn't sink any lower. Some of my PTSD symptoms provided me with the illusion of control and safety because there was no way anyone could attack me when I was constantly hypervigilent and hiding myself away at home. Stuff like that.

I think doctors really struggle with this, because yes, most people with physical illnesses WANT to get better, whole heartedly. But the very nature of mental illnesses means that they get tangled up in your thoughts and sense of self and can be very hard to let go of. It's not only anorexia that can provide sufferers with an identity, or convince them that there are a thousand reasons to stay ill and no real argument for recovery. I think this is a tricky part of all psychiatric illnesses.

Cathy (UK) said...

I'm really impressed with Katie's comment above... I do think that mental illness in general is grossly misunderstood. Katie draws parallels between (e.g.) AN and Bipolar. It is interesting that many (actually most) people with an ED also have co-morbid psychiatric or neurological conditions - and sometimes these supposedly 'separate' conditions interact and overlap. I have long thought that the DSM is rather fictitious and that in reality, humans don't have the capacity to develop dozens of separate mental illnesses, each of which has a specific treatment regime. There's just too much overlap.

Having a history of documented mental illness makes me feel embarrassed when visiting my GP for anything. For example, I have a chest infection at present, yet I was reluctant to go and see my GP yesterday lest she might assume that my physical symptoms are 'all in the mind'. Of course my high temperature and wheezing were very real/organic, but I still worry that I will be 'pigeon-holed' and not taken seriously because of my mental health experiences and labels.

ex ana said...

This post is just *perfect*!
Carrie, can I translate it (total or part) to Portuguese and publish it in my blog? (with original source reference of course)
One personal note about my first visits to doctors, many many years ago, the main reason: pure ignorance.

Kiersten said...

When I was having a hard time last year I tried going to a nutritionist for some extra help gaining weight. She knew I had an ED and claimed that she has worked with ED patients before, so I was hopeful. It was terrible though, I felt like she didn't understand (or even try to understand) at all. I stopped going to her after a few weeks because I was so frustrated. I think working with her made it worse for a little while, she had me worrying too much about calorie counting and what I ate. (NOT what a person with an ED needs, obviously)

Cammy said...

Great list, I think I've encountered variations on all of those reasons over the years, although #2, Powerlessness, is one I'd never given much thought before. I can imagine it is VERY frustrating to see someone whose immediate physical needs can be solved so simply, yet have psychological needs (that a physician isn't trained to deal with) that are such a frustrating roadblock. Now that I think about it, I've seen this too. I had a doctor tell me once: If you had an infection, would you turn down antibiotics? Well your problems all stem from starvation, so why won't you take food?" Of course my problems did NOT all stem from starvation, that was a manifestation of the problems, but that was how he saw it, and he basically hated seeing me walk into his office after a while.

Mishandling of ED cases by medical professionals is SO rampant, really glad you're writing about it.

JanMar said...

AMAZING post:) Doctors unfortunately DO NOT get it. Just as a gynocologist wouldnt perform open heart surgery on you. That is why there are specialists. If you can find a doctor who REALLY knows about Ed's then you are 1 big step closer to getting the help you need. My doctor told me she couldnt make me perfect when I complained of GI issues......2 years later I ended up in the ER from those issues and needed surgery! I dumped her ass!

HikerRD said...

One additional point to add--doctors spend on average 7 minutes with a patient, and only 18 seconds, on average, before interrupting them! So if you don't look like the extreme case of anorexia as their textbooks tell them, you won't be asked the appropriate probing questions to learn about your struggle.

And my heartfelt apologies to those of you who have had a negative experience with an RD, particularly one who claims to have experience with EDs! Please keep seeking! There are many of us out there who do get it.
Please see the latest post which addresses this issue.
Lori Lieberman, RD, CDE, MPH, LDN
Thanks, Carrie, for another inspiring post. I'm considering attending NEDA, and saw that you're speaking!

K-pedia said...

I have had a host of terrible therapists throughout my time in recovery ... I think it was largely because of the cultural mores of the region in which I was living.

Although I'm not LDS, I was living in Salt Lake City, where expectations for women are even more extreme than throughout the rest of the US (in my experience). Wives and mothers there are expected to be perfectly beautiful, perfectly compliant, and perfectly silent. Many housewives take meth so they can stay thin enough and maintain an illusion of having a lot of energy. It's a sad situation.

Anyway, these therapists clearly subscribed to these basic tenets, so when I came in asking for help, they saw it as being a weakness. A crack in my proverbial armor.

I had one (clearly Mormon) therapist tell me that I was a slut who needed to pray more ... because I was so sick and so insecure that I was doing quite a bit of sleeping around, in addition to my severe ED symptoms.

Not that all LDS or Mormon church members feel this way, but when there's a hue that tints the community's feelings toward illness like this, it can be very challenging. It's not always professional incompetence, but rather personal bias, that can hinder a doctor's ability to do their jobs.

Side note: I ended up at the Center for Change in Orem, UT, which is one of the best treatment centers in the nation. Many of the women I talked to there had similar experiences with their previous therapists. Thank goodness that place exists!!!

Carrie Arnold said...

Wow! This is fantastic feedback.

Ex Ana,

Feel free to translate away. Please send me the link when you get the post up. I love the thought that ED Bites


You raised another interesting point to add to my list: not enough time. I usually need quite a bit of time to screw up the courage to say something. I needed to ask an MD a few years ago for a psychiatrist referral because I was needing a med change, and I never ending up asking at my appointment. I had to phone back several times (I kept hanging up when put on hold because I chickened out) before I worked up enough nerve to say "My current meds aren't working. I super depressed and anxious, can you refer me to a psychiatrist?"

And please come to NEDA! It will be awesome.

xoxo Carrie

Andrea said...

Seriously- amen to ALL of these points. I wish I could share this post with all the doctors who confused me and reinforced my belief that I "wasn't that sick" before I finally stumbled across an amazing hospital and treatment program! Something else I've found with general practitioners since I've been solidly in recovery is that they tend to attribute any illness I now bring to them to something my eating disorder caused, or to anxiety. Although it certainly sometimes bears relevance, it doesn't always, and I wish that they could understand the amount of work I've put into both physical and mental recovery. It's kind of funny (in a perverse way) that I was frequently written off as "not really eating disordered" and now as "just that girl who had an eating disorder"... *sigh*

Grayce said...

Hi Carrie!

Just wanted to leave a comment. I've been reading your blog for a while now and I have to thank you for your insight, your honesty and for the wonderful information you provide on your blog! It's relieving and inspiring to come here and read! I relate SO well with So many of your posts!!

I loved this post about the ignorance of doctors regarding eating disorders!! AMEN!! I have SO many stories of doctors who are ignorant to ED and who are ignorant to the female athlete triad!! (I wrote about that on my blog today...) I had stress fractures in both of my femurs just from running-- rather than examining my Eating History/my menstrual history-- the sports med. doc I was seeing put me on a 'lighter running program' ... where I then fractured my tibia! It was NOT until I had FOUR stress fractures in different bones throughout my legs that he decided to get a bone density scan where it was determined that I had Osteopenia-- all from my lack of menstrual periods due to my Anorexia. HELLO?????!!

I don't know how they can be so ignorant, esp. doctors like sports medicine doctors and OBGYN-- who work with females and female athletes all the time!! SOO frustrating!!!

I agree with many of points and think that they are very valid. Ignorance is huge! That is why it's so important that WE continue raising AWARENESS!!

Thanks for your post!!


James Clayton said...

Absolutely brilliant post Carrie! Every point rings out (tragically) true and I would love to get this and post it around every single surgery in the UK and wave it in the faces of a fair few 'regular' people as well to challenge all the misconceptions.

Off the top of my head, I'd also say that it doesn't help when the professionals patronise you and treat you like a naughty boy or girl (tutting and headshaking will leave the patient feeling ashamed or just angry and won't magically motivate them out of it).

Some professionals are also too fixed in their methods and thoughts and very precious and inflexible (just like family members who fear the worst, in my experience). I'm wary when it seems that certain ideas and things are rigid and when there's no questioning it. It can feel oppressive and a little like trading one form of slavery (to the ED) to indentured servitude to the will of the experts with no room for fresh air. Structure and guidelines are important but if you've got someone standing as the absolute authority going "Thou shalt not be active for you are too fragile!" "thou shalt do this, this and this because you are too ill and messed up to know what to do!" and so on then the patient is never going to learn anything, get stuck in new compulsions and routines or might just rebel. (I hope that makes some kind of sense)

It's also sometimes easy to forget that it's a constant battle and that each therapy check-in is a single moment snapshot of mood and evaluation. The amount of times I've said "yeah, things are good and I feel I'm going places!" to my GP and then gone home and half-an-hour later dropped very low are too many too tally up.

Last one for now and my personal favourite: going on and on and on as if it's purely about food. When you're ambivalent about food, don't want to eat and when eating disorders are more of a coping mechanism or a manifestation of deeper issues, all the emphasis on food is frustrating and at worse sickening and upsetting.

Anyway, enough. Once again, brilliant and really useful post! :)

ex ana said...

Carrie, The translation of your post is now in Portuguese:

Erin said...

Excellent post. My best example of this (and I'm not saying it was anyone's fault but it certainly wasn't helpful) was being taken to a doctor by my mother at 14 when it all began. I had been skipping meals and she suspected (correctly) that I had been binging and purging. The doctor took one look (without even taking any obs) and said right in front of me, "She's a bit chubby isn't she? I wouldn't be encouraging her to eat if I were you." It cut so deeply as I was a highly sensitive 14 year old at the time.

For the next 10 years I would come back to this comment, never thinking I was thin enough to deserve help or that there was a problem. A lot of missing teeth and some serious heart damage later I'm fully recovered but every time I remember that ignorant comment it makes me so furious I could scream. If that happened now I would report him to the the authorities for such a dangerous and irresponsible comment.

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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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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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