Myth: We Know How to Set Target Weights

Anorexia Myths spoke to expert by experience JD Ouellette about the importance of overshoot and why it’s brain restoration that matters

AM: You describe yourself as an ‘expert by experience’. Can you tell me a little about your experience of eating disorders?

JD: In 2012, as a 17-year-old senior in high school (Grade 12 in America), the youngest of my four children, Kinsey, developed anorexia nervosa very suddenly. We were very lucky to get treatment at about the four-months-from-onset mark at UC San Diego (UCSD), widely acknowledged as the leading research and treatment facility—this was all down to luck as we live in San Diego. We were immediately given psycho-education that was as up to date as possible and promoted parental involvement and oversight past 18. My daughter ‘lost’ about a year of her life, including missing the end of high school and a semester at uni, to anorexia. With strong boundaries and supervision we were able to keep her at her brain-healthy weight long enough to fully heal. Ultimately, my experience of eating disorders is that early intervention, aggressive nutritional rehabilitation/weight restoration, and evidence-based care work for many, many people. 

The amazing clinicians at UCSD and beyond encouraged me to build on my knowledge by attending conferences, and gave me my first speaking opportunity at a conference. So in the past decade, I took my professional experience and education as an educator, spent heaps of time and money travelling to conferences and attending workshops, and worked with families to share the education I have had the immense privilege to develop.

My most direct lived experience is with a late teen/young adult, which also happens to have been the populations I worked with in education. I have a special, personal place in my heart for those navigating eighteenth birthdays and first years of university with a sick or newly-in-recovery kiddo as that is what we lived. 

AM: I believe that you and I agree that anorexia nervosa is a neurobiological illness with a strong genetic element. Why do you think so many in the field, including many people who have AN, still see the illness as largely psychological? And how do you think this affects treatment outcomes?

JD: This is such a fantastic question! First, I will say this affects outcomes by keeping people suffering longer than necessary, stopping short of full brain recovery by only considering weight from a physical health perspective. Quasi-recovery is such a torment and rarely holds for long, though it’s how far too many live their lives. 

I think there are multiple reasons, including, but not limited to:

• Historical and patriarchal casting of anorexia as an illness of girls and women (despite the first mention of this phenomenon of ‘self-starvation’ referencing a boy). 

• Historical casting of anorexia as due to controlling mothers and absent fathers, and the idea the child was taking on the expression of the family’s dysfunction. This persists in many quarters even today. 

• Research in two ways:

  • The 17-year gap that exists in medicine between research and practice. Our entry point was ten years ago and even since then a lot has happened, like the Anorexia Genetics Initiative and now with the Eating Disorders Genetic Initiative. So much good stuff is happening in academic spaces — and it’s just not being used in practice. I find this unconscionable to be honest.

  • Research that has come with some assumptions that took a wrong turn. For example the widely touted ‘Fiji Study’ showing Western TV arriving led to increased eating disorders has big holes in study design and sample size. We miss so much anorexia by considering this a Western illness. We miss so much anorexia by thinking this just happens to girls. This can happen to anyone with the genetic predisposition who encounters a negative energy balance.

“It is absolutely unreal that higher weight targets just have not been studied”

AM: In anorexia treatment, my daughter was set a target weight which was at the lower end of a so-called healthy BMI and very probably lower than her original weight. Needless to say she did not recover, and has never since gone above that weight. Why do you think some treatment providers set such low target weights?

JD: I think part of it goes to undervaluing the biology of anorexia. I think most of it is due to medical and societal thin bias and fat phobia. I think clinicians are often nice people who don’t like to see people in distress. I think the distress is so often highest just before getting over the hump that it’s hard for many parents to push as well. Our experience was that it is truly darkest before dawn, and we are not the only ones. I think there are folks involved in systems and programmes that are not always fully recovered themselves and unaware of a higher level of recovery than lifetime struggle, so the bar for recovery is lower than I think it can be. 

I also think, and this goes to discussion of research, that it is absolutely unreal that higher weight targets just have not been studied. This is where the family community is making change. There are now parents who are empowered through peer support to keep going on weight until the recovery light bulb is glowing bright. This doesn’t mean you are done; it means now you can start on whatever psychosocial issues were part of the environmental influence. 

AM: How do you feel about target weights in general? We know from the famous Minnesota Starvation Experiment that the men in that study all went above their original weight when recovering from starvation and this phenomenon has also been observed in mice. Do you think a target weight should always be set higher than someone’s weight prior to the onset of illness? And, if so, how much higher?

“In my ideal world, the target weight would be ‘brain is back online’. Then we look at the scale to see where it happened”

JD: In my ideal world, the target weight would be ‘brain is back online’. Then we look at the scale to see where it happened. If we absolutely must have some idea, I think we can set an initial checkpoint of personal growth curve plus ten per cent. And be willing to go higher if needed. Keep in mind anxious kids may have been managing school anxiety with some level of restriction since they began school and parents no longer supervised meals and snacks. In girls and women that have lost their periods (not universal), period return plus ten pounds would be my minimum for physical health and I would continue to look to brain state. I think any non-individualised and based-on-historical-growth-curves target is impossible to start with. One hundred per cent weight for height and 50 per cent median BMI? That is is exactly like saying every woman who is five feet five or 165cm woman must wear a size seven shoe or their shoe is ‘wrong’ and ‘unhealthy’. And if they develop blisters and bunions and other issues from the too small shoes, we just keep them in the too small shoes and give them therapy? 

Look—when food and weight gain have taken them from the depths of when treatment started to a better place, why think they stop working? It just does not make sense to me. I know 100 or more families over the last few years who just kept adding five pounds or a couple of kilos and evaluating. Many of their kids got ‘chunky’ for a bit or forever, and kids who were higher weight before are higher weight now. And they are in solid recovery at 10, 20, 30 pounds over what any clinician suggested or supported. 

AN: Some treatment providers look for ‘state’ rather than ‘weight’, in other words they are looking for signs that the person’s mental state has shifted in recovery rather than the number on the scales, and that is the point when weight gain can stop. But sadly we know that one trait of anorexia is that the person won’t necessarily tell the truth and will sometimes lie to protect their illness. How can we tell if someone’s mental state has really improved when we know that the illness can make them unreliable?

JD: For me, it is behaviours, not self-report. My daughter has since shared that every time she (anorexia) tried to guilt me out of supervision by saying she was fully recovered, that was anorexia giving it a shot. I want to see freely eating all foods, including formerly challenging foods, no problematic relationship with movement, acknowledging thoughts but using opposite action, insight into their anorexia and ability to talk non-defensively about it.

“I just talked to someone in the UK today whose child is 18 months in hospital, five kilos below what she was before she got sick, and on 2,000 calories a day through a tube—and the team insists more weight would make no difference!”

AN: Do you believe that weight gain on its own is enough for full recovery? Do you think this depends on how long someone has had the illness and how entrenched the behaviours and thinking about food and exercise have become? And if it’s not enough, what else needs to be done for someone to reach complete freedom from anorexia?

JD: I think some do resolve with only weight, but not everyone for sure. I am a huge believer in therapy, so when their brain is ready to engage, I fully support it. And I think different people need to do different things in therapy. Some folks have trauma, marginalised identities, co-occurring mental or physical illnesses that require more interventions and long-term support. Some need to work long-term with a dietitian around food allergies or athletic endeavors, etc. 

My own daughter benefited from lots of psycho-education around her anorexia and dialectical behavioral therapy (DBT). She took meds for a time and had an incredible psychiatrist. She had a fantastic registered dietitian who experimented with intuitive eating (well into recovery) and pulled the plug after very slow weight loss (without intent) resulted and they worked on a hybrid structured/intuitive plan that worked great. She did not engage much in individual therapy during her recovery, and stayed well by maintaining weight (mandated by us to stay in uni), and checking in with her psychiatrist, who also monitored weight in conjunction with the student health centre. 

A very sad thing I see often is families who actually have to stay away from therapeutic support or their public health system if they believe in higher fat/calorie meal plans or higher weights when symptoms are present, or longer supervision when they have a kid who has had multiple relapses. I just talked to someone in the UK today whose child is 18 months in hospital, five kilos below what she was before she got sick, and on 2,000 calories a day through a tube—and the team insists more weight would make no difference! It’s really awful at 18 when families are excluded because clinicians have pushed autonomy as more important than recovery. 

AM: I believe in a kind of Supernanny approach to anorexia treatment. By that I mean that the eating disorder behaves a bit like a toddler and should be treated in a similar way. If you give in to its demands, even a little bit—‘Okay, you can skip breakfast but you have to have lunch’—it will take full advantage of you. It probably won’t allow you to eat lunch and it certainly won’t allow you to eat breakfast the following day. If you hold firm—‘No, you cannot skip breakfast’—it will scream and shout and have a tantrum, but after you do this consistently a number of times, it will learn that it’s just not going to get away with skipping breakfast. Do you agree?

JD: I could not put it any better! I call it Full Metal Apron—tie it on and with compassion and patience and persistence get the food in. I looked at every snack and meal as the battle that could determine the outcome of the war. My daughter’s anorexia was quite emotionally dysregulated, cruel, and even physical at times. Our programme prepared me well as to what to expect and thus I had a cope ahead plan and could deal with it. I also wasn’t given any complicated instructions on how to feed her. I was given a calorie target (4,000 minimum) and I figured out that if we were going to fight over lettuce, I might as well fight over fettuccine Alfredo. 

AM: Funding into eating disorders research is woefully inadequate compared to other mental illnesses. I believe this is largely because most people still think that an eating disorder is a choice, that the person who has it is an active participant in their illness, which of course is false. Given the limited funds, what specific area of research would you like to see the money directed into?

JD: For me it would be the weight research piece and neurodivergence and eating disorders. Though there is obviously so much more that needs to (and is) being studied. 

I liken eating disorder funding overall as similar to funding for lung cancer. Even though it kills many, many non-smokers, funding is limited due to feeling like smokers do it to themselves. Most people have dieted and stopped, so they assume anorexia is a diet taken too far by someone vain and neurotic. 

AM: Can you talk a little about the work you do in the field, including your Full Metal Apron caregiver coaching. Do you think the growth of peer support, eating disorder coaching and meal coaching is changing the outcomes for people with anorexia and other eating disorders? And do you feel that prominent people in this field are having an influence more widely, eg in research and academia?

JD: Our horrific journey led to something amazing for our family. We found that from day one telling our story changed lives. So we kept telling it, all of us. I used to commute 45 minutes twice a day and would talk to a family in the morning and one in the evening, giving an ED primer to families just to pay forward our success. In 2018, the school I worked for closed unexpectedly. This was a classic door closing and window opening moment in my life. I had so much encouragement from other families, my own family and many clinician friends to open a coaching practice. My daughter has been an absolute rock star and helped many with this letter she wrote and shared online: Dear Mom and Dad, Thank You for Letting me Hate You.

I help families get clarity and alignment, develop a strategy, and acquire skills to implement their strategy. I provide psycho-education, targeted resources, and am a sounding board. I sometimes communicate with clinical team members with the family. I try to get a laugh in every session I have with families because that is often a sanity saver. 

I do think that prominent people are having an impact, and that a wider range of people are becoming prominent. We owe a tremendous debt to the parents who fought to open the door to family voices being heard. I cannot name everyone and, for me, Laura Collins Lyster-Mensh is a shero in the work she did and the changes she made, and before and with her Kitty Westin and Joan Riederer. 

Helping build Equip has been the joy and privilege of a lifetime, first as director of mentorship and now as director of lived experience. Dr Erin Parks is a researcher and clinician who understands the power and hope of families and lived experience. Kristina Saffran benefited greatly from an unofficial peer mentor and Family-Based Treatment (FBT). They are both tremendous visionaries and problem solvers. 

I believe their vision is the future of eating disorder treatment around the world. Care teams that include an MD, psychiatrist if needed, therapist, dietitian and peer and family mentors who all share a medical record and can easily communicate, that serve as consultant to the family/chosen family and collectively the recovery-supportive environment is built, all delivered virtually. Multi-family and skills groups and an incredible body image program that supports relapse prevention. Treatment that is based on data, and a treatment programme that includes research. 

In 2023 we will begin treating adults over the age of 24 and I am so excited to begin to see that programming, built to meet the needs of people who have generally been sick longer, and working with supports in different and nuanced ways than with children, adolescents, and young adults.

“The only thing wait-and-see gets you is seeing how awful it gets”

AM: Finally, if you could give one piece of advice to a parent whose child has anorexia, or another eating disorder, what would it be?

JD: Do not wait! Intervene immediately—get connected with F.E.A.S.T, get in family groups, get the book recommendations and the insights on how things work in your country, and start implementing nutritional rehabilitation even as you line up providers. Start with the biology. A clever mother told me she calls FBT Food Before Therapy and that is spot on. 

The only thing wait-and-see gets you is seeing how awful it gets. In the months leading up to diagnosis and treatment, I thought I had tried it all—explain, cajole, beg, plead. What I didn’t do was insist and use leverage like phone and school.

JD Ouellette is an expert by experience on eating disorders, a peer coach/mentor and professional educator, and director of lived experience at Equip