Monday, February 23, 2015

What doctors must know about eating disorders.

I want your input. I need to hear your voices. For EDAW 2015, I have volunteered to present to two medical residency programs—one in Boston, MA and one in Providence, RI on what doctors need to know about eating disorders.  I've incorporated recommendations from twitter responders and from Aspire, but I welcome more input. Here's what I have to share with new doctors so far:

  • Avoid the ‘Don’t ask, don’t tell’ approach. Patients rarely volunteer behaviors they feel ashamed of—bingeing, purging, diet pill and laxative abuse.  So providers need to ask. Nicely. Casually. Non-judgmentally. Include basic ED screening questions at routine visits.
  • Early action is not just for college admissions. Eating disorders are best identified early and treated promptly. We wouldn’t simply wait it out to see if blood sugars simply turn around in a patient with type 1 diabetes. Take eating disorders as seriously as you would cancer, or
    The time is now for improving medical management
    of eating disorders.
    diabetes, or heart disease. Because like these medical conditions, they cause physical damage, and impact emotional wellbeing. And did I mention that left untreated they can be fatal?
  • Relying on size is a seismic mistake. People of all sizes suffer from eating disorders. And because eating disorders in those of “normal” weight are often missed, they may be more chronic and challenging to overcome. Patients with anorexia can have high BMIs; they severely restrict their intake, are ruled by food rules and fear weight gain; their restriction impacts their ability to function, their mood, their blood pressure, body temperature, blood counts and thyroid level, fertility, bone density, and GI function.
  • ED sufferers want help. People with eating disorders ultimately want to be free of their disorder. They are not just being difficult. They may also be struggling with depression, anxiety and OCD making recovery more challenging. They are
    suffering with their symptoms making day-to-day life unbearable. In fact, the risk of suicide is higher in those living with eating disorders and is a major cause of death in this population.
  • Be careful what you ask for. Before recommending that your ‘overweight’ patients lose weight, do some assessing.  Has their weight or weight percentile been normal for them? What behaviors might be better addressed versus focusing on their weight? Diets can be the tipping point, precipitating an eating disorder. Striving to achieve and maintain a lower than usual weight contributes to maintenance of eating disorders.
    You can't simply tell by appearance that
    someone is suffering.
  • Guys (yes even straight guys) get eating disorders. Seemingly healthy, fit, guys, and overweight boys and men live with eating disorders. Like girls and women, they may restrict and be fearful of gaining, binge eat, purge, and compulsively over exercise. EDs have no gender limits.
  • Eating disorders may start in preadolescence, or at age 20, or in the 40s.  Eating disorders don’t expire when kids reach adulthood, or when adults mature. Individuals with EDs may first present for care after decades living with their ED or may have a late adult onset during a transition period in late adult hood.
  • Read between the lines and ask the right questions. Please don’t praise a patient’s weight loss. Would you say great job if they lost due to cancer? Do focus on reinforcing healthy actions, not numbers. Rather, ask:
    •  "What kinds of changes have you made?" 
    • "How do you feel?" 
    • "What percentage of your thoughts are spent thinking about food and eating?"
    • "How’s your energy level?" 
    • "How are you managing with these changes?"And note that healthy eaters are not always so healthy. Ask why your patient became a vegetarian/vegan. Why are they following a gluten-free or low carb diet?
Families play a critical role in
supporting a child's recovery.
  • Parents are necessary supports for recovery. Overwhelmingly, parents need to be brought in to assist recovery. And the only thing we can blame parents for when it comes to eating disorders is their genes. 
  • Eating disorders are serious mental health conditions. They have genetic, environmental and nutritional underpinnings. They don’t just “run their course” or become “out grown”. They require treatment by experienced providers. ASAP. Waiting may be lethal.
  • If you don’t know, please ask! Check out AEDs medical resource guide and this. Seek out providers to collaborate with who are part of national or regional eating disorder organizations like AED, NEDA, iaedp and MEDA.

Please share this with your medical providers. And with your friends. And twitter followers. And with your Facebook friends.

Eating disorders require education and a break from the commonly help practices and beliefs. And you can help make it happen.

Thanks again to those who have already shared their ideas that were incorporated into this post.


  1. Please caution doctors about falling into the "recover, but not too much (or too fast)" mindset. Sometimes, extra weight gain is needed for recovery to happen. Sometimes, the weight gain is fast. This is terrifying for sufferers. If it scares doctors too, it can lead to relapse or a different set if behaviors to try to slow/stop weight gain. I wish doctors would focus on healthy behaviors, and not on weight (as long as weight is not critically low).

  2. Have resources available. It's not enough to say to patients, "get help." Have resources for them to call. Sometimes getting help hinges on the exact moment of inspiration to seek it. If that moment is missed, it could be years, if ever, they seek help again. Having resources for the patients raises the chances that they will use them.

  3. A few things -

    1. Please encourage doctors to always tell the truth to patients. I know some clinicians may disagree with this, but there is nothing more frustrating than having a doctor tell you a certain goal weight and then as soon as you get there bump it up five more pounds and the five more pounds. This might be on a case by case basis, but I would much much much rather know up front what my doctor thinks my ideal weight should be. Having it constantly change made it where I didn't trust my doctor as much and felt like she was out to get me (I know irrational).

    2. Don't just have the medical assistant ask the questions for you. I recently had an experience where I had a new medical assistant ask me why I was at my appointment and I said a follow up for my eating disorder along with a couple other things. She asked "how are you doing with food" and I said fine. I wasn't necessarily doing fine, but I wasn't going to tell a random person that I've never met before. My doctor never mentioned anything about my eating disorder during the appointment and never asked specifically how I was doing with any behaviors (something I know you touched on above).

    3. Please still ask us how we're doing when we are at a healthy weight. There have been times where I've been restricting or over exercising even when "I look healthy" and my dr didn't ask about it at all (might be important for labs/vitals/general wellbeing). It can also be nice to hear your dr say they're proud of you or how they can tell you're working so hard (while not talking about how great we look)

    4. Please don't make us feel like a burden or like we're interrupting your practice where you should be treating patients with illnesses and diseases beyond an eating disorder. I've had experiences where I felt like my doctor didn't take my eating disorder seriously and didn't even really care about what's going on. It makes it harder to get help and to feel encouraged when you feel like your doctor (who should be looking after your well being) doesn't care. Every now and then it can be helpful to hear about the different things we're working towards health wise (beyond weight!!!) - explain about blood pressure and fainting, your period and why you need it (if female), energy and muscle stores for exercise etc.

    5. Please know that if you're frustrated with us and our lack of progress that we're probably incredibly frustrated with ourselves too. Please recognize that we don't want to fail, we're just struggling.

    I think those are all of the main points I can think of right now. I'm sorry they're so wordy and I hope they make sense!

  4. 1) Know unfortunately that we know a lot of "tricks" to try to fake healthy when we aren't. We aren't trying to out smart you, we just are in denial of defining behaviors. What we think is normal in fact would alarm a doctor. We just never think it's abnormal so you rarely hear about it. You need to ask details.
    2) I had no idea I had an eating disorder until my doctor said it to me and I was so aggravated at their "untruths". This was after I was passing out, couldn't ever breathe, dizzy and had a holter monitor showing 130 bpm in my sleep. I would never have known if my doctor didn't figure it all out. I thought something was wrong with my brain (but it was just a concussion from passing out) and my doctor kept saying it was my heart. I truly had no idea.
    3) We are generally very black and white so things need to be spelled out for us. Especially with food expectations. Always ask details when asking about diet (i.e how much of that yogurt did you have?).
    4) We honestly trust our providers (more than they'll ever know) and want to make them happy and do exactly what is suggested, however, our fears are so strong that we can't always do what you want us to do, even with the very best of intentions. It's not a lack of listening, it's because we are too paralyzed by an eating disorder to let it go (it's the one coping skill we feel comforted by). If we could eat for you, we would happily. If we could stop taking laxatives and not workout for you, we would. This is far from a choice, it's living tortured. And none of this is for attention, most of us want to disappear when walking into a room.
    5) If possible know what specialists you're sending us to. I've been to cardiologists that have told me it's okay to restrict as long as I'm not throwing up too. So apparently anorexia is completely fine but bulimia is dangerous on your heart. And he told me to "party" more. So clearly I never went back. Another cardiologist told me my weight was completely fine and just to try not to lose any more. Not a word about caloric intake, no questions asked. Just based the whole two minutes he gave me on weight (as I was eating 200 calories a day). Try to push health, not weight at all. We are being told to not focus on numbers but sometimes providers will throw BMI and weight in our face and think just b/c our weight is normal we are fine. In fact, I'm heavier when I restrict.

  5. I wish doctors could truly understand what it is like for ED sufferers. I think someone like you can actually shed a bit of that light on them. Things that come to my mind when I think about what doctors need to know include the following: Above all, treat us with the same respect and dignity that you would treat any other patient. Be kind and hide your frustration because we are frustrated as well. Ask questions, lots of them. Ask them EVERY SINGLE TIME, the same ones. If you don't ask me I will not tell you. Questions that I think are pertinent include: restriction, mood, binging and purging, activity levels, laxative use, diuretics, weighing behaviors, thoughts. Don't ask me how my clothes are fitting. Not only is this an ignorant measure of health but I also cannot interpret how my clothes are fitting - I am not a trustworthy reporter. Don't weigh me backward and then leave me alone in the room with the scale. I dont mean to be manipulative but my ED takes over when I am with you. Adults with eating disorders do not deserve to be treated as children, we are not defiant, we are disordered. We wish we weren't. We are so filled with shame that without your empathy we will leave your office worse off then when we arrived. If you only focus on my weight I will never be sick enough - especially in my eating disorder's opinion. If I get that sense from you then my thoughts and behaviors will spiral out of control. When I say I don't know for sure if this is a problem, no matter how crazy that sounds please believe me that I truly don't know. Threats are awful, and sometimes SO necessary. Don't brush me off. Please be smarter than my eating disorder. Don't let me get away with anything. Tell me all the horrible things I am doing to my body and why it has to change, even though I don't always believe it I have to think there is a little part of me inside that hears you. Be in touch with other members of your patient's team to have the most comprehensive picture of what is happening.
    I truly cannot imagine treating eating disorder patients. I imagine it is frustrating and precarious and that it seems like a very thin ice to skate on, and it is. Maybe that is why seeing our doctors can be so scary, we know that at any moment what he or she says could trigger us in the wrong direction.

  6. I have been enjoying reading your blog posts. Maybe I have missed it, but a post I'd like to read is one about how -- as a client -- to have a good relationship with a dietician/dietitian.

    That kind of information might benefit your EDAW 2015 medical audience because it would equip them to coach people for success in work with an RD.