I was going to blog more about mortality rates in eating disorder patients, but recent ED-related deaths have left a bitter taste in my mouth (huge understatement). So, I’ve decided instead to write about a paper requested by the founder of The Joy Project on clinician reactions to patients with eating disorders by Thomspon-Brenner and colleagues that came out this year.
If you have an eating disorder or are close to someone with an eating disorder, you’ve likely heard many stories about dismissive or down-right negative and harmful attitudes that clinicians often have toward patients with EDs.
I’ve experienced it myself: I had to find another doctor to refer me to an outpatient clinic, because the first one didn’t – he didn’t think I needed help (probably because I was very aware that things were not heading in the right direction even before I was at a low weight). Needless to say, my new doctor refereed me ASAP, thankfully, and by the time I got diagnosed, I more than fit the diagnostic criteria. So there’s that: a clinician standing in the way of early detection and treatment.
These attitudes hurt patients, a lot.
The goal of Thomspon-Brenner et al was to review published studies on clinician reactions to patients with EDs. They found 20 such studies (from 1984-2010). The summary of their analysis revealed:
Clinician negative reactions in regard to patients with eating disorders typically reflected frustration, hopelessness, lack of competence, and worry. Inexperienced clinicians appeared to hold more negative attitudes toward patients with eating disorders than toward other patient groups, but experienced psychotherapists did not experience strong negative reactions to patients with eating disorders. Medical practitioners consistently reported strong feelings of lack of competence in treating eating disorders. Negative reactions to patients with eating disorders were associated with patients’ lack of improvement and personality pathology and with clinicians’ stigmatizing beliefs, inexperience, and gender.
Here’s the summary of the main findings:
MAIN FINDINGS
Highlights of studies of inexperienced clinicians and trainees revealed:
- first year residents (including psychiatry residents) had more negative attitudes toward patients with anorexia nervosa than obesity or diabetes
- medical and nursing students considered patients with eating disorders to be significantly more responsible for their illness than schizophrenic patients
- 31% of therapists from a variety of disciplines (psychiatry, psychology) preferred NOT to treat eating disorder patients
- most common feelings toward ED patients included frustration and anger
- nurses working WITH ED patients reported increasingly MORE negative impressions of ED patients as their interactions with them continued
Specialists and highly experienced psychotherapists had overall better responses:
- clinicians in this category did not experience the same degree of negative feelings toward ED patients
- high alliance between physician and patient was reported in highly trained psychotherapists
- the most common negative reactions were: frustration, lack of competence, worry and boredom.
- difficulties that experienced clinicians report when working with ED patients: lack of readiness to change, resistance, nature of illness, negative affect
General surveys of medical professionals that do not work specifically with ED patients:
- clinicians often felt lack of confidence or competence in treating ED patients
- a 1990 survey found that 54% of physicians felt incompetent in treating patients with eating disorders (second most common area of perceived lack of competence).
- many desired increased training in EDs
Why do clinicians react the way they do?
Thompson-Brenner attempted to identify predictors that account for the negative reactions.
Clinicians’ reactions to patients with eating disorders appeared to vary according to the perception of the patient’s response to treatment, the degree to which clinicians endorsed stigmatizing beliefs about the patient’s responsibility for his or her illness, the amount of experience they had had generally and specifically with eating disorders, their gender [male clinicians held more negative attitudes than female clinicians] and discipline, and the patient’s personality pathology [reactions were worse to patients with Axis II personality disorders].
Importantly (and this is true for everything, not just mental health):
Negative reactions to patients with these disorders in the form of stigma may contribute to the reluctance of patients to seek or continue treatment. Decreasing providers’ stigmatizing beliefs and behaviors would likely result in better access to care and more successful referrals and outcomes for patients with eating disorders….. clinician attitudes, knowledge, and stigma likely adversely affect both the quality and the availability of services for patients with eating disorders.
In reading this review, keep in mind: the studies were collected over 3 decades of research and a lot (arguably) has changed in our collective understanding of the biological nature of eating disorders and how to treat them. How much of this is still true today? I don’t know – more research is definitely necessary.
What about depressing findings such as this:
Data indicating that clinicians commonly hold blaming or stigmatizing attitudes toward patients with eating disorders were collected across a wide range of years, locations, and professional disciplines. When asked in 1992 to consider the origins of psychiatric illness among patients with anorexia nervosa, schizophrenia, and recurrent overdoses, medical professionals considered patients with the eating disorder significantly more responsible for their illness than patients with schizophrenia and about as responsible as patients with recurrent overdoses. Furthermore, the same study found that these attitudes did not change over the course of training.
What can be done about this?
I think it is abundantly clear that healthcare professionals – nurses, doctors, dentists, therapists, nutritionists, etc.. – would benefit from improved training on issues in mental health, particularly eating disorders. The first few years of training seem to me to be a critical time to really emphasize the importance of taking mental health concerns seriously. I think the best way to achieve this is by educating students on the etiology of mental disorders (as much as we know), on what treatments are available and how well they work, on why patients may behave the way they behave, and how to interact with patients in a way that validates their feelings and makes them an ally, not an enemy. Maybe brining in patients with eating disorders to share their stories (I’d definitely do that if I had an opportunity). Brain & Behaviour is a huge section of my University’s first-year medical school curriculum – yet, with the exception of a problem-based learning module, eating disorders were not covered (in the year my boyfriend was a first year medical student). It seems other mental health issues suffer the same trajectory. Why are rare neurological diseases covered but more prevalent mental disorders not?
In my view: this training needs to happen in the first 2 years of medical school. Not during residency. Why? Because much of what needs to be taught will impact the quality of clinicians’ interactions with patients – all patients. Why else? Because in the case of eating disorders, as I blogged earlier, they are mental disorders with physical consequences. From dental erosion, to numerous GI and cardiac problems, amenorrhea and possible infertility – it is likely that if you are in or plan to go into medicine, you’ll encounter patients with eating disorders (whether you know or not). It is important to be aware of that, be aware of your prejudices and preconceived notions: because the implications are huge.
Importantly, eating disorders are not the only problems that get ignored, dismissed or not taken seriously by clinicians – unfortunately. A 30 minute CBC radio podcast (by an ER physician that works in the same hospital where my lab is located, actually) had a very good show on this very topic (he didn’t cover ED’s): Diseases that get no respect. I highly recommend it – it includes perspectives from patients, clinicians and delves into some of the reasons for the problem.
Readers – share your experiences with clinicians (good or bad) and your thoughts on the matter: how would you go about improving the situation?
Edit: Accompanying news article on this paper from Psychiatry Online (with quotations from Thomspon-Brenner) can be found here.
Follow-up Post: When Clinicians Do More Harm Than Good – Part 2: This post looks at some negative consequences of treatment and asks the question, can treatment do more harm than good?
References
Thompson-Brenner, H., Satir, D., Franko, D., & Herzog, D. (2012). Clinician Reactions to Patients With Eating Disorders: A Review of the Literature Psychiatric Services, 63 (01), 73-78 DOI: 10.1176/appi.ps.201100050
Excellent post! And (sadly) a very important topic!
I was once referred to an endocrinologist after my blood pressure went from chronically low to chronically hypertensive for no apparent reason. As soon as I mentioned that the blood pressure change had started during refeeding from a bout with anorexia, the lady’s whole demeanor changed. Suddenly, everything I said was met with immediate, sarcastic questions.
At one point, and said “if someone of YOUR age, and YOUR size *actually* had high blood pressure, for *real* (looks me up and down with elevator eyes)…um….that would be a BAD thing. A bad, bad thing.”
My response: “Um, so you think I might want to…I don’t know….SEE A DOCTOR, maybe?”
Finally, she decided to check my vitals. After measuring my blood pressure while laying down as 160/145, she informed me that the elevated blood pressure was due to me being “upset” because she “wasn’t taking my bullshit”.
That was about 8 years ago, and it still makes my blood boil!
Awful experiences! I’m sorry you had to go through that!
Thanks for the article suggestion – it was a great read! (In a frustrating way, of course).
Definitely an important topic.
I have been recovered for about 3 years now, and I *still* remember (and get super pissed off about) some of the shitty “help” I received when I first sought out help.
The first was a psychiatrist who decided early in our first meeting that I was “a kid who got depressed and lost a lot of weight”, so I should just deal with it. While it turned out to be true, that I did have depression, I felt completely invalidated at the time, as I actually developed depression a couple of years after that meeting.
The other was a nutritionist, who, when examining the results of my blood test, saw that my cholesterol was very high, and said “I don’t care about your weight, I just care about controlling your cholesterol” – at the time, I was quite underweight, and, though I can’t think of them right now, I am fairly certain studies have shown a correlation between anorexia and high cholesterol. Moreover, her suggestion to “combat” high cholesterol was to eat more meat, as that would “also solve my weight problem” – her words. She tried to convince me that avocados contained cholesterol, too. She was GREAT, clearly.
ANYWAY, long story short. Yes. There needs to be a change in attitude towards patients with EDs; and I am not entirely sure how to change that. I think adding a component where it becomes compulsory to somehow make medical students to try to understand the experience of living with an ED might be helpful? (Medical humanities person, here…)
That’s crap – sorry you had to deal with that BS!
I don’t think it is necessary or even possible to make someone understand what it is like living with an ED. It is irrational and kind of crazy. I can’t understand what it is like to hear voices: I don’t. I find that when people say “I understand”, when they clearly don’t, to be annoying (to say the least).
I don’t think medical professionals need to understand the experience of everything they might possibly have to treat. But, at the very least, I think they need to start being taught that EDs are only superficially about food and weight. They are not actually about food and weight. I think teaching them about what’s known about the etiology (personality traits and disorders that are comorbid, heredity, neuroscience findings, etc…) would be helpful.
And this needs to be done early, before people specialize – because I think every clinician, regardless of what they do, needs to have some training and understanding of mental disorders more broadly. They can’t just ignore it because they don’t want to be psychiatrists or neurologists.
I just feel that trying to understand what it is like to have an eating disorder might help at least with empathy and/or understanding what eating disorders are about; ie, not about food and weight. No, I don’t think medical professionals can understand the experience of everything they might treat, but in the case of psychiatric disorders, I think it might be particularly helpful to at least have an idea what it is like to live with one, in order to have a fruitful dialogue with the person living it – otherwise, the conversations aren’t really on the same level.
Like, for instance:
Person with ED: “I feel fat”
Understood as and responded to with: “that is irrational, it’s about her weight, let’s change body image; “fat isn’t a feeling'”
when in fact, the person with an ED in this example might mean that she PHYSICALLY FEELS “fat”. If that isn’t understood, it is hardly surprising that patients often feel like they aren’t being understood or treated accordingly.
And yes, I agree. Early teaching is good. And yes, definitely, focusing on aetiology, and drilling it in that it is not about cultural stuff, would be a definite help.
As a clinician who has learned about eating disorders because there was a need to provide care and I wanted to fill it, and because i have family members struggling with EDs whose experiences in seeking treatment also were problematic.
I have been “blamed” for my child’s eating disorder, as a mother.
I have been told to keep her ED a secret from my professional colleagues.
I was dismissed by her primary care provider when seeking help for her ED–even though I believe her pediatrician’s thincentric attitude and lecture in front of my then 10 yo daughter about her being “overweight” (girls gain weight prior to puberty in my family) was a major trigger in the condition.
Poor communication by the intake workers at the program that offers ED services led to her not being admitted there the first time, and even the second time, the “doctor on call” for the psychiatric facility told me she “didnt meet criteria” for an admisison, underscoring that clinician’s complete lack of understanding for EDs. That clinician was a psychiatrist covering for the entire psych facility, including EDs.
Outpatient therapists in my area do not understand EDs, and one in my area who advertised as an expert directed me to AVOID residential treatment at all costs–even though data that i later reviewed indicated that this is often the best first place to start. This same “expert” diagnosed my daughter (who had anorexia) with Oppositional Defiant Disorder and terminated our care because she was “resistant”.
Our insurance company refused to pay for my daughter’s residential ED treatment, stating that she needed only “day treatment.” There is no day treatment for EDs near us.
I am now working hard to create a day treatment program in our area, and I dont have a lot of support. There are other day treatment programs nearby, and many area clinicians feel that youth with EDs can benefit from just attending those–which are typically for youth with disruptive behavior disorders, AODA and legal problems. One person who advertises as an ED “expert” who treats eating disorders even told me “what’s really the difference? ODD and EDs are both all about power and control?”
For my daughter, we continue to struggle. We travel an hour one way to see her therapist, who is ACTUALLY capable of providing appropriate therapy. Our (new) pediatrician is nice, and wants to treat EDs, but struggles. Twice his staff has failed to use proper protocol with my daughter.One resident who lectured her about the dangeriousness of obesity when he saw how much weight she’d gained between January and March (before and after a medical hospitalization for re-feeding). A nurse recently failed to do a blind weight and we are on a backslide. My daughter doesnt have a child psychiatrist–because she cant be my patient, and there is a tremendous child psychiatry shortage (7000 of us in the country, and 30,000 needed)
I am working hard to learn more than i currently know about EDs. I have to. For my daughter. And I APOLOGIZE to families that have contacted me previously and been told that I dont treat EDs. I confess, I was NOT really trained in EDS, despite 6 years in post-MD residencies and fellowships in Psychiatry. I APOLOGIZE that because of my discomfort, fear and anxiety, I have asked you to go elsewhere, when really, there was no where else to go.
My daughter’s own ED battle left me questioning. “why, why of ALL things, would she have the condition I most feared and most struggled to understand?” She has, in her typically overly-mature fashion, struggled to make meaning out of WHY she has to experience this. I have struggled to make meaning out of why she has to experience this. THe only answer that made sense, was that it was time for me to fill this need. And I am doing so.
Dr. Jenna, thank you SO much for your comment. I’m so sorry about the experiences you and your daughter have had to deal with – it is heartbreaking to read.
I’m happy to hear that it has motivated you to try to fill the need as much as possible, and in your attempts to set up a day treatment program in your area. It is a tremendous challenge and I wish you all the best. Truly.
Your comment really illustrates the need for better education and training and the effects of the absence of training (or bad training) with regard to EDs. Devastating, really.
Sigh. I look forward to more of your comments in future posts and I wish only the best for your daughter.
I sure do appreciate your compassionate understanding and encouragement. I look forward to continuing to share experiences and to collaborating.
Dear Dr. Jenna,
seeing this post 4 years later, I can only hope that your daughter and your new practice have benefited by your sensitivity and caring. With my admiration and caring, Julie Montal, mother of former anorexic (now 25) . I am writing a book, in French, where I have interviewed parents in 25plus families who have dealt with this dread disease in their child.
You are a great mom and a compassionate doctor!
Please do not beat yourself up. I am a suffer and my parents were both highly professional and baffled, too.
That was long ago and all the things you say- wow– we went through them, too, so long ago. Has so little improved? My doctor said I was just a skinny teen and said that until I almost died. Had to go into regular hospital before even the pysch ward.
Once there, the staff once sat me in front of the whole group of troubled teens and said I was killing my mom and dad with my not eating.
My own mother had to tell them to stop that heinous treatment or she was taking me out AMA.
They did not let my priest come in to see me even though he had driven 1 hour and a half to see me. They turned him away.
I have had therapists eat in frot of me, smoke in front of me, laugh at me when I said my heart was beating strangely. To this day I have heartbeats that have to be monitored.
My family and I made the decision NEVER TO TELL any health care providers about my ED. If my heart acted up, we went to my Dr and said my heart was beating weird. It was the only way to get to see the cardiologist.
Once they know you have an ED, that is ALL they see! Another time, I had drop in blood cells and the Dr said it was just the ED.
Well, I had to go to the ER and he said, “OMG you MUST see a hema.” and he refered me. The Hema was like, “Why didn’t you come sooner?!”
I never told him I had as ED and he still checks my blood.
That is just the approach we took. No mention of the ED ever again. Sad to have to hide that, but that is the way it has to be until research and understanding increase. With Dr’s like you that can happen! You are fighting for your daughter and also for us, people you will never meet, but people who need your voice so much.
So THANK YOU!
As a parent of an anorexic child, I was dimsayed to find that the attitiude of the health care workers was very cavalier. There are few resources for young people in our area and what information is available is very unorganized and often inaccuate. As we progress down the path of recovery, I find that attitudes of both Clinicians and the general population is very narrow minded and accusitory towards the patient. “It is your fault that you are like this” and ” you are very selfish”. These attitudes are very troubling. For those of us who are involved in the process, we realize that it is a mental disorder, a disease, not a choice that these patients have made. I hope that everyone that is dealing with this awful disease has the strong support of someone who loves them enough to stand up and fight for them until they are strong enough to do it for themselves.
Michelle, thank you for your comment. I agree that strong support is necessary in recovery – I definitely needed that.
I’m really glad that your daughter has you her side, as you clearly has a good understanding of eating disorders and that, I think, is very important for her recovery.
I wish you and your daughter all the best.
I do think that clinicians with dismissive attitudes is an issue that needs addressing. But I also think that some of this study (at least what you’ve presented here — I have not read the whole thing) is misleading.
I was seeing a very competent LCSW for PTSD issues surrounding domestic abuse, plus general depression and anxiety. I saw her for several years. She helped me a lot and I am very glad that I saw her. I’d had an ED in my past but it wasn’t an issue at the time I was in treatment with her (though she did know about it). But when something re-triggered the ED and I was relapsing, she admitted to me that this was not her area of expertise and she didn’t feel that she could provide me with the best treatment for ED issues. And I was glad that she was so up-front about it.
She referred me to a colleague to be evaluated, and we sought out programs and clinicians in the area. I began seeing a dietician and checking in with the ED therapist monthly. The two therapists (who were not in the same office/practice) communicated regularly. Ultimately, we decided that the best course for me would be to switch to another therapist who specialized in ED’s. Thankfully, I’m in an urban area where therapists are in abundance. But if the problem is lack of training, I would rather have a clinician of any type be honest with me. And I’m wondering if this is the case for some of those in the study who “preferred not to treat patients with EDs” — if it’s not a bias against the patients, but rather an acknowledged lack of expertise.
Yes, I think there probably should be more general training for EDs and other mental health issues. But I also think that we need to recognize that not every clinician is going to be well versed in skin cancer, either… or crohn’s disease… or hypothyroidism… or rehab after serious bone breaks… or any number of things. I, too, have been kicked around by the medical system. But it’s mostly been by doctors who didn’t believe/trust me. THOSE are the situations that need addressing with EDs and other conditions, too. I don’t believe that everyone who prefers not to treat me because of the ED should be demonized, and that seems to be a bit how things are being presented here. I don’t think that my PCP is the best one to treat cancer, either, but when she acknowledges that, I’m not going to think less of her, but rather, more.
Hi EinDC, thanks for your comment!
That’s actually not how I interpreted the results of the study – I agree with you, being able to recognize when they’ve over their head and making a referral is a hallmark of a competent clinician, and I don’t think all general practitioners or primary care physicians should be required to be EXPERTS on eating disorders (with the culture of ever-increasing specialization, that’s not likely to happen anyway) but I think there’s a need for physicians and other clinicians to know enough about EDs to acknowledge that:
– EDs are a legitimate disorder with potential serious mental and physical consequences,
– And to recognize when they’re in over their head and the patient would be best served by a referral.
And the first item above directly affects the latter. For example, if an individual presents at their annual check-up with signs or symptoms of an ED, and the doctor isn’t very knowledgeable about EDs, they’re unlikely to either recognize the problem, take it seriously, or both. If you don’t see the problem, you can’t refer someone. If you hold uneducated or stigmatizing beliefs, e.g. think that EDs are just a “normal teenage phase” or “for attention”, that your patient will “snap out of,” – you likely wouldn’t make a referral for any further care.
There’s a lot of literature out there on the correlation between mental health literacy (accurate knowledge) and stigma towards individuals – the more you know, the less likely you are to make negative incorrect assumptions.
There’s also the problem of there being NO regulation of what it means to “specialize in eating disorders”, but that’s another topic…
But you do raise an important point, and that is that not all clinicians are malicious and shouldn’t be demonized; there are some great health care providers out there, it’s not a homogenous group by any means.
And I’m wondering if this is the case for some of those in the study who “preferred not to treat patients with EDs” — if it’s not a bias against the patients, but rather an acknowledged lack of expertise.
Could definitely be, and that would be something to keep in mind! Thoughts, anyone?
Yes – that was stated in some places that their preference not to treat patents was because of their perceived lack of competence and experience. Which is legitimate but raises the point that more opportunities for training and education should be made available. It is not a bad thing that they don’t want to treat something they feel they can’t – that’s completely fine. But, it is a problem if 1/3 – 1/2 of those who specialize in mental health, avoid EDs altogether.
I am horrified by the professionals who fail eating disorder patients in this way. This is what makes those who specialize in eating disorders so remarkable: they don’t shy away from the difficulty and they educate themselves with great dedication.
Education of general practitioners is necessary, and, as you mention, EARLY in their training.
The AED links to a curriculum, but I can’t tell how widely or often it’s used: http://www.ama-assn.org/ama/pub/physician-resources/public-health/general-resources-health-care-professionals/educating-physicians-controversies-challenges-health/epoch-cme-eating-disorders.page?
Somewhat tangentially related, but I wish there was a standard for what it meant to be an “ED specialist.” Right now, as far as I know, it means nothing – you have people like BT Walsh or Cynthia Bulik in the same group with some clinician who’s still working from Bruch’s “Golden Cage” or who wants to talk about your “poor body image” to the exclusion of all else…as you would put it, “feathers and beads.” 🙂
I am a Certified Eating Disorder Specialist with the International Association for Eating Disorder Professionals (IAEDP). The certification involves supervised clinical hours and a test. There are professionals who devote and dedicate extra training, time and investment in being able to refer to themselves as a “specialist”. I hope this is helpful.
Thanks Angela! Is this certification available just in the US or actually internationally? Did you find the extra training to be really helpful? What kind of things did you learn (I’m just very curious!)
Thanks for commenting!
Tetyana
I have had doctors tell me that purging and taking laxatives a few times a week “wasn’t that bad” when I went to them to tell them I was relapsing (after 9 years of battling my eating disorder on my own). It was the first doctor I ever told. I was told by another doctor that purging blood is “normal” and to expect it, and by yet another doctor that because my bloods were ‘normal’, it didn’t matter that multiple EKGs were abnormal. I’ve been constantly referred to specialists to try to figure out and assess my symptoms, without actually addressing the root of the problem, which is the years I have spent battling a self-destructive eating disorder.
Finally, a year later, I have found a doctor who I really like. She may not be well-versed in eating disorders (or at least that’s the kind of vibe that I get from her), but she takes the time to listen to me and my concerns, and addresses them without judging me. She talks me through everything, and always tells me that if things aren’t going well to come right back and see her…whether they’re not going well health wise or nutritionist/therapist wise. After going through a couple of nutritionists, I’ve also finally found one who works with me instead of feeling like I’m being judged or told what to do…and she understands that I can’t be expected to just be able to do what she’s saying without messing up. She’s supportive of the small victories I’ve made, and encourages me when I get discouraged. I’m also one of the lucky ones who’s found a therapist I really like on my first try. She works with me, and though (like with my doctor) I don’t think she’s specifically trained in eating disorders, she takes the time to work through things with me, and I also feel like she’s taken time to do research on her own because it feels like her knowledge of eating disorders has grown tremendously since I first started going to her.
Having doctors and other professionals minimize and dismiss eating disorders and related symptoms is one of the most difficult thing I have faced in my battle for recovery thus far…and I get so angry when I talk to other people with similar situations. It makes it that much more difficult to open up and continue trying when you’re made to feel like and idiot, or like your worthless or beyond help. But my advice to anyone who has this kind of interaction: keep moving…keep switching doctors until you find one that’s a fit for you because once you do, it makes life that much easier. Do NOT continue to see a doctor who minimizes your struggles.
KMF, thank you very much for your comment. I’m glad you wrote it because I think it is really important for anyone who may come across this blog entry to realize the awful consequences of dismissive and judgemental clinicians. I’m angry and sad that you had to deal with that.
I’m glad, though, that you’ve found a doctor and nutritionist that you really like.
What you wrote about neither of them being particularly well-versed in EDs *BUT* taking the time to LISTEN to you, take you seriously, not judge you, not expect you to be perfect (and not take your “messing up” as a sign that you don’t want to recover, which I think some clinicians might) and how those thing (their willingness to learn, really) are what’s helping you – that is vital point.
I think it is important for all healthcare professionals to realize that very important fact: they don’t need to be experts in everything, but, they absolutely cannot be dismissive, condescending and judgemental – at least not if they want to do their job well and *actually* help their patients.
I’m looking forward reading more of your comments.
What irritates me almost MORE than this, is that in addition to the clinicians not taking us seriously, our insurance companies in turn are making decisions based on their biased care/recommendations that they are making.
OR, there’s also the fact that even when our providers are competent and understanding, many so called “doctors” or “medical professionals” who work for the insurance companies that review these cases are uneducated and ignorant about ED’s. Why would they decide to cover the the appropriate level of care when the doctor reviewing the case thinks that “dieting, watching what you eat, and having low self esteem and bad body image are normal, where I live here in Florida”? (Yes, an insurance doc actually said this after denying an appeal for more days in residential and wondering “why the heck is this intensive of treatment even necessary?”
Needless to say, the woman working on my behalf at the treatment center filed a formal complaint against him. Also, I’m bulimic, thank you very much. How normal is it in Florida to make yourself barf multiple times a day, jerk?!)
I really think medical professionals AND insurance professionals need to be educated. Great post.
Thanks Jessica, I agree. I think your complaints about insurance companies applies to pretty much everything. I support socialized healthcare. I do not understand the justification for having a middle-man that profits from charging you a lot and giving you as little as possible in return. The argument that it drives medical costs down has been debunked so many times.
With the exception of maybe 2 or 3 proffessionals, I would say that just about every doctor, nurse, and therapist that I’ve seen has been incredibly ignorant about eating disorders. I can understand that a normal doctor might not know the very intimate details of eating disorders, but they should at least know something. I’ve experienced so many harmful comments from health professionals that it’s gotten to the point that I am scared to go into their office and talk to them about any of it. I actually dropped out of therapy a year and a half ago because she wanted me to go see a doctor and I was too scared to go because I always receive such negative reactions.
The first time I ever sought treatment for my eating disorder was two years ago. Prior to being admitted to the program, I had to get a full assessment. There are no eating disorder specialists in my city so I had to go to a normal clinic to get the assessment done. And it went so incredibly bad. I left that clinic in tears afterwards. The nurse doing my assessment was asking me questions about what behaviors I used and I remember at one point, after telling her that I purged, she told me that it was “cool”. She also made comments about my weight (“If you’re over xxx pounds, why in the world are you going to treatment?”) and asked me for dieting tips and all sorts of crap. It was a nightmare.
The worst experience I ever had, though, was during a one week stay in a psych hospital. Because there was no local eating disorder care available me, I was forced to go there for a week and they knew literally nothing about eating disorders. I was at a healthy weight and I got multiple comments from doctors asking why I was even there. A social worker took one look at me and said- “I was told you had an eating disorder but you’re not even thin! You should just eat a sandwich and drink some soda and you’ll be fine!” I was even asked if I was just trying to be a cheerleader or something.
Mostly they’re just so ignorant that it prevents people from getting help. I have gotten to the point that I will not willingly admit to a doctor that I have an eating disorder. I won’t talk about any of the symptoms that I experience or seek out any kind of help at all. They always do more harm than good. Every single time I go into a doctor’s office, unless they’re an ED specialist, I leave feeling like complete crap with my self esteem completely shattered. It’s just kind of ridiculous.
[comment edited by Tetyana to remove numbers]
I’ve often wondered what it is that separates those who are able to recover from those who become chronic or who die from an eating disorder – and while I feel it’s probably a variety of complicated factors, we know that early detection and proper treatment early on are invaluable to a sufferer’s prognosis – and it’s maddening that so many people who actually DO see a clinician early on, or for younger patients, whose families express concern – are dismissed. I’m trying to be careful about how I word this because I don’t want to sound self righteous or completely bitter but how can you describe what it’s like to live with a chronic eating disorder? There comes a point where treatment interventions of any kind are far less likely to help, and once a person reaches this point and then has HAD lots of treatment (too late) it becomes a problem where the patient becomes “treatment savvy” and is much less likely to have a positive outcome.
It’s truly tragic. I appreciate this post – I was just pointed to your blog tonight and have to say I really admire you for doing what you’re doing. Thank you so much.
SB: Thanks again for the compliments! It means a lot to have such positive feedback so early on.
I completely agree with you, it is tragic. You don’t sound self-righteous or bitter for wanting the kind of care that physicians should rightfully provide. But, of course, it is a complex problem that will take time to resolve.
There are many studies looking at the predictors of remission and recovery. I’ll post about it in the future, for sure.
I was due for an upper endoscopy yesterday due to chronic bulimia, which turned out to be a 10 minute consult. I was astonished by his asinine demeanor throughout the entire visit. He criticized me from the moment he walked into the room, at one point stating that my lifelong battle with depression and anxiety, plus my 7 yr battle with bulimia was due to a “failure to get my act together.” How he could even assess my life in those mere 10 minutes is beyond me, but this type of bullying attitude is absolutely unacceptable, given that all three conditions stem from a biological cause (chemical imbalance) and are certainly not due to a character flaw on the patient’s behalf. It just astounds me that such arcane, cruel attitudes are rampant within the medical profession and are often directed at some of the most vulnerable patients out there.
I’ve been dealing with what is quite clearly disordered eating for at least a year now, and before that I never had a healthy relationship with food or with my body. I finally asked for help when I was inpatient at a psych hospital for suicidality. They sent a dietician to see me who told me that I was not diagnosed with an ED, and she only deals with ED patients. So just eat more and if you’re worried about gaining weight just do some exercise. No shit sherlock. That was when I was eating once every few days and was really, really not doing well. So I guess for anyone to know what to do with me I’d have to be sicker. This is how that happens. Clinicians refuse to help, so patients continue to get worse so that they can get help when they’re deemed worthy of it.
Thank you so much for writing this, it is so spot on and matches my experiences and that of many of my friends very well. A nurse during one of my hospital stays said that I was a spoilt brat who was doing it to get attention from my parents. She continued to make remarks along those lines whenever she was saw me. She came to see me after I had an NG tube inserted and laughed and said “that’ll fatten you up”. Obviously this caused a tonne of unnecessary stress and anxiety. If she had bothered to read my chart she would have seen that both my parents were dead and might have realized that she was well out of line but she never did and I was young and too afraid to say anything but damn if I ever saw her again
Hi Anna,
I’m sorry to hear you’ve had to experience that, but thank you for writing about it here: I think it is important to voice our experiences so that the topic isn’t buried under the carpet with everyone pretending things are fine. I’m glad you didn’t see her again!
Tetyana
Oh, this touched a nerve. I’ll never forget being aged 14 and having my mother take me to the doctor about my eating issues and behaviours.
She had no idea of the scale of the binging/purging or whether it was happening at all (believe me, it was bad) and at the time I was well within the healthy weight range. I had been acting increasingly avoidant and strange about eating and had lost significant weight
My well-meaning mother tentatively explained what she knew and ask that I be physically examined, weighed and referred if needed. I just wanted out of there so said little. What the doctor came out with next is forever burned on my memory,
“She’s a bit on the chubby side, isn’t she? I really don’t think there’s anything to worry about. I certainly wouldn’t be encouraging her to eat.”
Needless to say, this was petrol for feeding the flame of my ED. It totally reinforced all the feelings of being unworthy of help, of accepting that I was sick and that
only thin people are deserving of worry or concern.
Even 12 years later having been sicker, better and everything in between, I’m filled with anger at incompetent, judgemental clinicians fumbling around in the world of EDs with no idea of just how much damage they are doing.
“She’s a bit on the chubby side, isn’t she? I really don’t think there’s anything to worry about. I certainly wouldn’t be encouraging her to eat.”
I got that exact same statement from my GP when I was about 11. Knowing that my food intake was not excessive and in fact very healthy (I hadn’t eaten sweets for 2 years because I hadn’t felt compelled to), I started an exercise regimen even before puberty. Everything went downhill from there. I really, really dislike the attitudes of medical personnel towards weight, healthy, dietary choices. I get uneducated and belittling comments about my ethically motivated veganism (nothing to do with the ED), I got laughed at and ridiculed during each session by my therapist for explaining my feelings and views in my somewhat detached, “scientific” manner (but that’s really the way I perceive the world and process that information! If I can’t get all touchy feely, at least listen to my explanations and figure out what emotion I am trying to convey! That’s their bloody job…) I’d love to get involved and help improve the matter, but how???
When it comes to years of expensive “Awareness” campaigns, which hope to improve the lot of people with EDs, one can begin to wonder where the money and effort might most effectively be directed.
And how receptive the medical profession might be to the idea that the very people who direct their training might hold less-than-helpful attitudes of their own.