Thursday, May 26, 2011

Eating Disorder Denial. Missing the Big Picture Isn't Pretty.

Professional conferences don't tend to bring me to tears. But the opening session for this year's MEDA conference (Multi-service Eating Disorder Association ) broke with convention.

Doris, now a therapist, was simply a mom, a seemingly fine and quite likeable mom at that. She had a lovely husband (or so he appeared from the video clip displayed), provided a nurturing home (from what I could casually assess from her words and images) and had two lovely daughters. And now she has only one. Her younger daughter, Andrea, died 12 years ago from bulimia.

I am not new to this field of eating disorders, nor am I naive about the risks of having an eating disorder. In fact, not infrequently I am the treatment team member reality checking about the need for a higher level of care, pointing out the writing on the wall, so to speak.

Yet Doris caught me off guard. Even for me, her story about Andrea was alarming. Andrea became bulimic toward the end of her first year of college. Perhaps not atypical. But Andrea got help reportedly after only 2 weeks of eating disorder behavior, of purging. A therapist, MD, and dietitian were all a part of her recovery team, seeing her weekly.

Andrea reportedly looked healthy, by her mother's account. She was a normal weight—also not unusual. Bulimics are often normal or average weight, but restricting bulimics may present underweight. The danger, of course, is that being a healthy weight in many ways increases your risk. Strange? Here's why. At a healthy weight your risk may be minimized—by your own distorted thoughts, by your family and loved ones who see you as visibly healthy, and by the medical community which may not be triggered to ask the necessary questions about your eating disorder behaviors. Yes, we could all be in denial.

Just last week I had a rather unpleasant situation arise following a new patient session. Abby presented for her first visit along with her mother. Here's the summary: Her weight was below a healthy BMI and less than 90% of her healthy and usual body weight. She had lost significant weight, about 20% of her weight from the past year. Abby was restricting her food intake, eating close to nothing all day. Abby planned a binge, and subsequently purged once daily. She also was active, playing a team sport and exercising on her own. Admittedly the exercise wasn't compulsive, just frequent.

Oh, I forgot to mention that one month prior she presented to her pediatrician because her mom was concerned about Abby's hair loss, a common occurrence in eating disorders and with malnutrition, which can certainly also be caused by other conditions. At that time, her weight was just as low, and she had been in her disordered pattern for close to a year and a half.

Well, how would you assess the situation?

Toward the end of our lengthy initial session, it was clear that Abby was struggling to accept much if any change. I think a glass of skim milk was about all she would agree to increase—certainly not enough to keep her safe. So I made it clear that all exercise needed to cease. I urged a higher level of care—given how little change she was prepared to make—and a follow up with the MD (sooner that the 3 month visit that was planned).  And what was the end result? I was fired by Abby's family, and not thought  favorably of by the MD;  my direct acknowledgement of the need to be addressing this case differently was not well received.

Why share all this?

Because even I can get sucked into denying the reality of a situation. Because all of us are far too accustomed to measuring health and risk, based largely on body weight. And often that misses the boat. Because while I like to focus on the positive changes, the improvements patients are making over time, sometimes just heading in the right direction is not enough protection from the risk of maintaining an eating disorder. Because the health impact of eating disorders, both physical and psychological, are major, and shouldn't be minimized—not by the dietitian, the therapist, the physician, your family or community. 

And certainly not by you. Because eating disorders can result in death. And Doris can attest to the fact that this is no exaggeration.
Thank you, Doris, for sharing your wisdom with all of us at the conference and for allowing me to reference Andrea’s story on this blog. 

If this blog motivates even one eating disordered individual to change, or one health practitioner or family member to shift her thinking, it will be a great achievement. And please check out Doris’s website at

Thanks for taking this post seriously, and for passing it along to all those who need to read it.


  1. You pretty much just smacked me in the face. You were writing to me, someone who hides my bulimia so well that sometimes I even forget I have it. Every purge is "the last time", but of course it isn't. I don't want to die, but getting help seems far out of reach. I would have to admit to my family and husband that I am still bulimic. I feel like, after 11 years of purging, how can I stop? I don't remember any other way.

    Thank you for the smack because I forget that my bulimia is a problem.


  2. WOW, it reminds me of what I witnessed when my daughter was eating disordered. Not just the anorexia, but the alternating with bulemic binges (which at first I didn't realize could even coexist.. thought it was one or the other!). However, it was she who told me about the binges, driving to a local fast food joint in this college town, eating everything she could, and then vomiting into the bag and tossing it (I was alarmed!). Or going to the 23rd floor of the library to get sick! I was alarmed enough at the restrictions and weight loss and then horrified by this binging/vomiting. Eventually, it ruined all of her teeth. I first noticed it before she went away to college (the weight loss), but during the first year of college (which seems so critical for so many young women), I grew increasingly alarmed (tears in my eyes when I noticed how thin my 5 foot, 10 inch daughter was becoming)... by both behaviors and what I was able to learn was going on (she would make calls home and did not seem alright and she had strange behaviors around eating that made me uncomfortable, like the painful way she would eat it and just a tiny bit at that! The exaggerated expression of discomfort then like she'd overdone it having this ant sized portion!). Then there was the time I went to visit her at college and she asked me to buy her a new toothbrush (she had ruined the prior one shoving it down her throat to vomit!). I tried to call the college counseling center that was seeing her, to say I was scared she might be suicidal. From what I could see, they did nothing (never assume when you ask for help you can count on it!). THREE WEEKS LATER: It reached critical proportions the day she made a very serious suicide attempt in early December of her first semester of college over the number on the scale. This resulted in a forced medical withdrawal from college and hospitalization/s. I know there were still concerns after she returned (but didn't realize this till I came across you tube videos where she taught others how to get sick--accidently I discovered this--and was horrified). Also saw pics of her posted into videos with excruciatinly thin young women, displaying food that made it look disgusting, etc. I am glad to say today (a few years later)she appears to be healthy and I am so grateful. But there were times I was very frightened and very scared that I could lose her, when I made calls about to her pediatrician, the college itself and later to find out what treatment options were available. I did find a good eating disorder therapist for her. Ironically, she was referred to you Lori by this therapist (and another therapist she tried and didn't care for before that one), but never would go. I can tell you as a mother it was a horrifying and painful experience. I am also well aware I could have lost her that day of the suicide attempt when too much time had elapsed before she got to the hospital to pump her stomach). To know it was all over a NUMBER on the scale that she didn't want to reach (and a healthy weight for 5 foot, 10 inches) was terrifying....

  3. This past year, I had a friend who died of bulimia. She was overweight.

    I had another friend die from anorexia... she was "heading in the right direction." But her body gave out.

    Until it became personal, I didn't take the life-threatening aspects of eating disorders seriously. Now I do, and I am so thankful for my life.

  4. This is important for people to know! I feel weird being diagnosed as ED-NOS. My BMI is slightly into the overweight category. I lost a lot of weight by exercising obsessively, used laxatives only 4-5 at most, and now within the past year diet pills. I thought maybe it would be taken more seriously, but my doctor doesn't say too much. I don't look like I have an eating disorder. But I live it every day.

  5. Laura Collins once wrote a post entitled "If you're not taking flak you're not over the target" - well it sounds to me like you were the only one on target with Abby's case. The Dr and the family just didn't want to take the flak.
    Sometimes I find all this ED business so overwhelming - it's such an incidious problem - it makes us so devious and manipluative. Really it's no wonder Abby's family weren't a match for it. But the Dr should know better.
    Hopefully, with time and reflection Abby's family will come to see just how right you were and realise just how lucky they were to have someone with courage to stand up to the ED.

  6. So many times I think "When I was sicker..." which translates to "When I was thinner..." It's hard to remember that "weight restoration" does not equate to recovery. This a nice reminder that regardless of weight, ED behaviors are dangerous, and we shouldn't sweep them under the rug just because someone looks "normal." Thanks for the post, Lori!

  7. I was in the waiting room for the lab at my medical office recently. I saw an obviously anorectic woman waiting, too. I overheard her talk to the receptionist about her "pregnancy test" and it seemed clear to me that she was pregnant. I immediately thought about her ob-gyn. Was he going to address her eating disorder that was screamingly obvious, or would she have a miscarriage before she even got to him? I was curious how her care providers were going to handle this because I am pursuing a degree in midwifery and know that I will deal with this issue with my patients in the future. So, so sad.

  8. @LauraT I would even question whether a fertility specialist helped enable this pregnancy. Generally, but not always, when someone is so visibly at a low weight,they are not able to conceive.

  9. I wish more medical professionals felt the way that you do. I experienced an acute period of severe anorexia 2 years ago. Because my health was in such serious danger family and professionals jumped to my aid. I was weight restored but simply engaged in fully blown bulimic behaviours instead and ended up relapsing into anorexia and withdrawing from services because my bulimia scared me so much, yet everyone was fixated on my weight and anorexia and didn't seem to concerned as long as I wasn't severely underweight. Now, 2 years on I am still diagnosed with anorexia. My Doctor is fully aware that I purge and am suicidal but does little more than tell me 'you need to gain weight'. I have numerous indicators that I am experiencing health problems relating to probably nutritional deficiency yet she has not so much as suggested a blood test or EKG. A CBT therapist I was referred to also refused to work with me til I stopped my Psychoanalytic therapy (which I didn't want to do as was my only support and the wait list for CBT was huge). I am more unhappy than ever. Sometimes I feel so let down by services. It is so hard to reach out for help for an ED as refusal to/fear of change is such a big part of it. When medical professionals allow this to continue and don't reach out to you the way that you so desperately need it just reinforces your sense of hopeless and the impulse to turn your back on everyone and engage more in your ED as you feel it's all you have. I applaud your concern and desire to help those suffering from EDs-in WHATEVER form, not just anorexia!

  10. I meant to make the point that I am still underweight but not drastically so, hence the apparent lack of concern. EDNOS and bulimia sufferers seem to receive the same treatment sometimes-minimalising the risks of their ED because their weight is not a concern. Might I add that suicide is one of the most significant risks with an ED, not just an individual's health status!

  11. @ xEllex Thanks for your comments. Hope you can find some support from this blog and the comments of others on these posts.

    The more I've been doing the work I do, the more it's apparent that therapy (including negotiating dietary changes and changing perspectives on food and eating, as well as psychotherapy of any kind) is not going to be successful unless you are getting adequate nourishment. It's a bit of a catch 22, but to make good use of providers and our services, there must be re-nourishment.

    That being said, I realize that most providers fail to look outside of the simplistic measures of change, such as weight and BMI--truly ignorant! Pass this around to your providers and anyone else who doesn't get it--perhaps it will get you more support.

    Good luck with your recovery. Use your supports and contract for safety, please!
    And if you haven't already, please join as a follower!

  12. Thank you for sharing this story. I am in my late 30s and struggled for about 13 years with my eating disorder. I had been in true recovery for about 8 years now, but somehow, over the past 3 months, have been experiencing the closest thing to a relapse I have since becoming healthy. I am a normal weight, probably somewhat over clinically. I had been truly completly free of my eating disorder and then what started off a few months ago as a simple "diet"/trying to eat "healthfully" has plunged me headlong into some old behaviors, resulting in pretty quick weight loss, and the return of old ways of thinking that have quickly taken hold. I am working with my therapist on it, have increased my sessions, and am trying to move past this, but as a person who is not yet "thin enough", it's hard to tell myself enough is enough and to stop thinking I'm not "done" yet. My focus now is trying to be on my children and family and the hurt and dysfunction this could cause them - but the denial of risk is so great sometimes... Anyway - I go on, but your story struck a chord and I really appreciate that it made me think.
    Thank you.

  13. I run a trauma informed care drug/alcohol recovery center for women. I write today simply to vent...I had to discharge a client yesterday for doing what she needed-outing her disordered eating. Despite providing treatment for her ED she continued to "look healthy" and so everyone thought she was fine. Suspecting and then seeing and verifying the reality of daily, binging and purging still has put me in the position to be the evil one. Her family is threatening to sue me and she is convinced that I set her up to fail; denial everywhere. I wish the client could hear and understand the care and concern we have for her; most of all that her family who was covering for her would get out of denial. ED is slow suicide and a horrid master; God help her!

    1. While I don't know the details of this situation, do consider whose needs get met/not met, when a patient is honest (finally) and shares that they were misleading you; dumping them as a client hardly reinforces their motivation to be honest; their dishonestly prior may speak to how challenging it is for them, and the need for a different type of program--perhaps one integrating eating disorder treatment and substance abuse treatment.