Defining "prevention"

Lot of talk about preventing eating disorders out there. For most people the word prevention means stopping an illness from happening at all. I think that is the only good use of the term, myself. It is what the public means, and what I mean. Preventing cavities or cancer means not developing them at all. It is why you don't hear me talking about preventing eating disorders: I don't know of any intervention known to actually work to prevent the mental illness called an eating disorder. I like to think that we can stop eating disorders from happening, but I see no proof. Furthermore, once an eating disorder has started the talk of prevention starts to sound a whole lot like blaming. "What did I fail to do?"

Here's what parents need to know: the word "prevention" is used very differently in the eating disorders world. As well described here, ECED Debates - Are They Educational?

PRIMARY PREVENTION is what I mean and you probably do, too. Preventing the eating disorder from happening. Even for those with a predisposition, not developing the illness at all because preventive measures are in place to keep from tripping the wire.
SECONDARY PREVENTION is "early detection and treatment of an illness with the preventive goal of avoiding chronicity and irreversible complications" I call that early intervention and treatment, not prevention.
TERTIARY PREVENTION is "rehabilitation whereby damage caused by the illness is reduced as much as possible and intact functions are preserved." Again, that to me is treatment for those who were not caught early and properly treated.

But, to complicate matters, there is another set of uses for these terms! Hold onto your hats.

PRIMARY PREVENTION is often used to describe community-wide prevention work, while SECONDARY PREVENTION is called "targeted" prevention as it focuses on people considered at particular risk.

Somewhere in here, in the headlong and well-intentioned efforts, is also a confusion of ideas: disordered eating and eating disorder; and body image distress and Body Dysmorphic Disorder. There is an assumption that preventing body image distress will prevent BDD, and that preventing disordered eating will prevent eating disorders. That assumption needs to be questioned as well: do we really know that these are true? If so, how strong is the effect? One kid in 20? One in 1,000? One in 100,000? Not that one in a million isn't a good thing, but is that where our efforts should go? Or is preventing eating disorders the only reason for these efforts?

There's a risk to "prevention" work, and here I'm only talking about primary prevention. The risk is that we put our energy into something that isn't working and could possibly be deterring the treatment of those who are ill. What if "prevention" work is holding back families and patients from really understanding the gravity of the illness and the urgent and grueling work of recovery? What if ideas about prevention end up sounding more like "stop thinking that way" and "society made you ill so you can't get well until we fix society."

This is unpleasant negativity at a pleasant party, I know. Many of my friends are very focused on primary prevention and many former patients have found it very helpful in their recovery. I'm actually ALL FOR the positive body image work, myself, but NOT for the prevention of eating disorders. I want an end to dieting because it is unhealthy and masks eating disorders and may, in some cases, trigger an eating disorder that otherwise would not have happened. But I don't see any evidence that primary prevention - and that is the only place the word prevention should really be used - is effective. Let's do it for its own sake, and work together to better use the information we DO have about eating disorders, and focus our energy on getting more information.


  1. What a great blog and what sense you talk. I have, until now, been baffled about the whole "prevention" thing. It seemed to me that no-one talks about "preventing" autism. I now understand and I am grateful.


  2. Laura, I think that as more doctors especially (a parent usually according to the data first brings the child/young adult to the family doctor), as well as parents come to understand that paying attention to anything that a young person exhibits that seems unusual -- for example, anxiety which is known to be in the background before an eating disorder begins for 2/3 of those with the disorder -- could eventually serve as a prevention as you discuss it here. I like to imagine that if all of us could address this early in our children (speaking generally), perhaps we as a society could reduce the frequency of eating disorders.

  3. I'm definitely with you on this issue, and I've tried to explain it to the people who run the ED charity I volunteer for to very little effect. Trying to prevent body image distress might lessen the number of eating disorders which are triggered (because the initial malnutrition has to come from somewhere, and diets are as good a trigger as any), but it's not going to stop them completely. If our societies didn't seem to value thinness anorexics would just interpret their behaviour in a different way - maybe similar to my (non-body dysmorphic) thoughts, which were around safety, control and invisibility. It frustrates me when people talk about body image awareness work as being the key to preventing eating disorders because it's nowhere near that simple. For a start you have anorexics like myself (ex anorexics in my case!) who never had body dysmorphia in the first place, and secondly even those WITH body dysmorphia would still be at a high chance of developing an ED the second something else stressful and anxiety provoking came along. Exams, or trauma, or physical illness leading to malnutrition.

    The prevention of bad body image is great, I'm all for it. I just think it needs to be kept in context. It won't stop people getting eating disorders.

  4. To be completely cynical, prevention talk is easy and feels good. It can't be criticized, as of course it is good to try to improve people's body image and to decry our society's mania for outward appearances. But "kept in context" is right, because the real context is that it ends up blaming patients for their mistaken thoughts and families for failing to protect someone from the wrong thoughts.

  5. Jen, what you describe is the goal, absolutely - and may indeed be the best "prevention" we could do.

  6. I really feel that many prevention programs do more harm then good. Programs that are directed at kids, whether they are "body image" or "nutrition" based, can often introduce ideas that can lead to triggering those who are predisposed towards eating disorders. I would much prefer to see a preventive model which educates parents, coaches, and teachers as to the biology of eating disorders. I would like them to be sensitized around issues of health and nutrition, and I would really like them to be educated as to what to look for in the early stages of a developing ed. I think that adults, not kids need the prevention education.

  7. It was with relief that I read this post, Laura, as I would hate to annoy yet another person (on a loooong list) by pointing out that primary prevention (in the first sense you mentioned) cannot be done where you have no idea of the etiology of an illness.

    Until we have more, much more information about the biology of anorexia nervosa, we will have to focus on secondary prevention, or even tertiary. In fact, only too rarely are we able to engage in secondary prevention because of how late patients are referred for definitive treatment. We are very commonly, unfortunately, stuck doing tertiary prevention.

  8. The last time I checked, there had been more than sixty empirical trials aimed at primary prevention, but no clear evidence of success had been developed.
    Therefore, we need to be cautious about asking Congress or the NIH to fund large scale prevention programs at this time or asking schools to devote time and resources to prevention efforts. Without evidence of effectivenss, we risk losing credibility and damaging the reputation of the community of eating disorder advocates. On the other hand, I think there's enough evidence already that early detection and intervention are helpful. Let's put resources there.

  9. I absolutely, 100% agree with all of this... as well as the comments above.

    I never attached 'meanings' to my AN that had anything to do with body image, and I didn't start to restrict food because of body dissatisfaction. Actually, at the outset I lost weight inadvertently and not through a diet of any sort. I started to over-exercise because I was very anxious, and found that exercise was tranquilising. And so I did more of it, and my increased energy expenditure led to weight loss because I'd always been a poor eater. I'm not sure that my AN could have been prevented by any pre-intervention strategy, and certainly all this 'love your body' stuff would have been futile for me.

    Many of the ED prevention programmes are based upon feminist theory (and so neglect boys/men for starters!). Not all of them focus on getting us to 'love our bodies', but attempting to boost self-esteem by 'finding alternative ways of being a strong woman'.

    IMO that is also futile. It may also be counter-productive. Many people with EDs place high expectations on themselves in areas of their lives that have little to do with physical appearance: e.g. academic or sporting achievement. Some people fall into EDs through following government guidelines for 'healthy eating'!

    Early recognition and early intervention provide the best means of helping people who are vulnerable to developing EDs.

  10. Well, nice to see that we all agree! So how is it that so many are moving in the opposite direction and what can we do about it?

  11. What a 'nourishing' discussion! I agree with all views conveyed on the nebulous value of 'prevention' work. No evidenced-based research demonstrates that it succeeds. Seems to me like a costly diversion, a highly risky one at that, away from where the real focus must be -- on early intervention. Let's stick with what we know. I congratulate Laura for raising this topic and for presenting the case so eloquently. I was in Sydney on Friday as a co-chair on the Consumer (dislike that term intensely) and Carer reference group for the National Eating Disorder Collaboration here in Australia. I also am the CC group's link to the Prevention and Early Intervention group. I look forward to sharing the discussion here with this group. I know I will meet opposition. Governments may find it enticing to give money to 'Prevention' as a token be seen to be doing 'something'. But this is taking precious funds away from where they really need to be. I can hear 'ED' laughing already. We need to focus on Early Intervention. The FIRST stage. As Daniel Le Grange said to me recently, how can you stop or prevent something from happening, if you don't know the cause? If you don't know what has caused it?

  12. Lovely post. I personaly feel very insulted everytime someone mentions eating disorder prevention. I feel that people think I started "dieting" because I was obsessed with how I looked and wanted boys to like me, while infact AN striked when I was at an age where I still thought boys where kinda gross. All this talk suggests that I choose to starve myself and would not have gotten ill if teachers had spoken to us more about "loving our bodies". Amost makes my cry. We did have people coming in from the national eating disorder association(not the american NEDA, but our swedish equivalence) a couple of times while I was in high school. They had us all sit in a ring (girls only - boys where let out early on these days) and talk about self-acceptance, "being strong independant women and not letting men walk all over us" and "owning our sexuality"(I am all for that, but mind you we were a bunch of fifthteen year olds). This was years after the onset of my AN and I remember my mother furiously calling the school and storming of to the principals office when I told her about this. I should note we never had one of those classes again, and at my graduation the headmaster walked the other direction as my mother entered the room. (She reads your blog and as I know how this topic gets her going I'm sure she will leave a comment aswell).

  13. I agree so much with what you have posted, Laura, and with the comments here too. I feel insulted by the widespread belief that EDs are caused by vanity and body image primarily. For me, body image was just one of the triggers and not even the main one. It feels strongly like I was predisposed to develop this illness somehow. Body image wasn't why I developed anorexia - for me, I was not coping with everything going on in my life and going from coping method to coping method. I was a very obsessive, perfectionist, low-self-esteemed personality so everything I did, I did it 150%. And so when the idea was planted in my mind that I was too fat, I took dieting 150%. By the time I realised my error, I was too sick to turn it around. That was a very brief time of my disorder - about 1 year all up out of more than 15 - 20 of being acutely ill with it. The rest of the time, I hated being TOO skinny. I wished I was feminine. I hated myself even more for what I was doing to my poor body. And everyone, including myself, focused on the obvious mess of my body enabling me to still keep on hiding what was really wrong. I know that had I been helped at a young age to learn how to cope with what life threw at me maybe things would be different. But feeling so predisposed to this - often I feel that had it not been food/body that was foremost at the crucial moment, I might have become a drug addict, an alchoholic... I really feel there are certain personality types/genetic predisposition. Why aren't there more SERIOUS studies being done into this disease? It's killing so many people and yet it's still largely swept under the carpet, as some silly 'vanity neurosis'.

  14. The statement from Daniel Le Grange in June's comment above is interesting and true. The truth of the matter is that we really don't know how or why EDs develop. We have some ideas, but there is a plethora of various theories - ranging from socio-cultural and/or feminist theories, through psychological theories (such as not wanting to grow up), to purely biological theories. However, no two people with (e.g.) AN are exactly the same.

    But what we do know (about AN) is:

    1. The person with AN fears food, or eating, or the effects of eating on their body size or bodily function - and this fear is totally overwhelming.

    2. The more the person adheres to their behavioural rituals and the more weight they lose, the sicker they become. The emaciated individual with AN is like a robot who is directed purely by a set of rules in their head around eating, exercise, purging etc.

    3. Weight gain and 'full nutrition' are essential to recovery from AN. However, just stuffing a person with food under duress doesn't work. Often, this augments their fear of food and eating, because it is traumatic. I think that the key issue relating to re-feeding is that the person with AN needs to learn to tolerate the anxiety associated with eating - through de-sensitisation, with encouragement from caring and empathetic individuals. (My psych introduced this concept to me at the outset of treatment when my BMI was dangerously low).

    4. As the person becomes less phobic about food, eating and/or the effects of eating and their body and mind repair, they are better able to engage with life and find activities and/or relationships that become far more important to them than AN. The need for eating and exercise rituals fades and they are able to enter into life again.

    The problem is that the above process may take years to achieve, and professional support is rarely available for the entire period of recovery. Many ED patients are discharged at a time when they are most anxious.

  15. I haven't commented so far as I have become a little ambivalent about this issue.

    I recently attended a training day on presentation skills for people wishing to educate others about eating disorders. We were a diverse group with diverse views and backgrounds which was fine - we all benefited from the good training. I couldn't hope noting though that the best "natural" educator was approaching the subject from the Primary Prevention angle (teaching children about body image, self-esteem, photoshopping etc.) I am sure that she will include the "eating disorders are serious mental illnesses" in her presentations, and I'm certain that this lovely, attractive woman will do her level best to "first do no harm" and probably succeed. Her talks will be interesting, informative, entertaining and useful. I would attend one in a flash because she's an excellent presenter who knows what she's talking about (the fashion industry).

    I'm not sure that her presentations will do much to prevent eating disorders, although I don't think they will in any way encourage dangerous experimentation either. They will increase empathy for people who have them because those listening will have a vivid illustration that these disorders can affect lovely, vibrant, clever people from happy families and that full recovery is possible.

    The problem comes (as the original debate stated) when resources are targeted at this level of prevention the evidence for which, as June has stated, is so nebulous.

    Is there anything we can do to ensure that Eating Disorders Awareness week doesn't JUST become a week long emphasis on body image and disordered eating and can actually become a week dedicated to true information about these illnesses?

  16. Back to the conversation with a link to this op ed piece in our Tucson paper about the potential/possible prevention of mental illness:


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