Who’s ED Awareness Week for, anyway?

I got this email from one of my readers yesterday, and I thought Bob J. brought up so many valid points in this email. He gave me permission to share it here:

One thing I wonder about is who “ED Awareness Week” is really for.

 Is it for the public, is it to rouse the media, is it for sufferers…who exactly is it for ?

 And what exactly does it hope to make people aware of ?

  That people have EDs ?   Well Duh.

  Perhaps it’s that EDs are not just for teens, and that all sorts of people can get them.  That’s probably a good thing for people to realize, but then what ?

   Is ED Awareness Week primarily a vehicle for getting people into treatment ?  I can certainly see where the profession would be behind that.  More money for expensive residential providers, and a boost for ED therapists.

   Who is it supposed to help ?

   Not that it’s a bad thing, and it’s probably something more than just do-gooders doing good, but that part still seems kind of murky to me.

 Is it supposed to be one of those “all things for all people” sorts of things?  It kind of seems that way.

  Or even an “ED Pride” kind of thing ?  As in how are the sufferers on the various ED support boards supposed to react to it ?  To be frank (and as a member of those boards myself) that’s where the largest community of ED sufferers reside, so what are they being urged to think ?

 Go get treatment ?  Maybe it might nudge people in that direction, but I suspect you know how likely that would be.

  I just find it all kind of….opaque in it’s direction, and almost like a strange cheerleading sort of thing.

  And perhaps that’s one of it’s problems ?

I think Bob totally nailed it: who is ED Awareness Week for, anyway?

Most of the people I see participating already know about eating disorders, so I feel there’s this sense of preaching to the choir. Nor do these awareness weeks do much in presenting new information about EDs that the public wouldn’t know just by picking up People magazine. OMG TEH WIMMINZ HATE THEIR BODIEZ! Two questions: how is this news? And what does it have to do with eating disorders?

{Don’t worry- tomorrow I’ll be picking apart the messaging in more detail, so you can start drooling in anticipation of uber-snarkiness in 24 hours!}

The problem is that most ED advocacy organizations don’t talk to each other all that much. I think if there was more consistent (and, dare I hope) accurate messaging, we might do a better job. What about addressing the expense of treatment, the difficulty accessing it, the lack of good treatment options even for those who can get it? More controversial and it probably gives you less of that warm, fuzzy feeling, but wouldn’t that, I don’t know, have a bigger effect?

What do you think? Who is ED Awareness Week for? Who do you think it should be aimed at? How can we do things differently?

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27 Responses to “Who’s ED Awareness Week for, anyway?”

  1. To raise awareness, and to step away from the stereotypes? To fight for better access to services (NHS here, so not really the private providers conflict)? To let the public and professionals see the people behind the disease, and to realise that we’re still humans

  2. Great post, Carrie. Speaking of consistency, I wonder why the Canadian and American Eating Disorder Awareness Weeks take place on different weeks… surely we could consolidate efforts across the continent? An odd little quirk, I suppose. I certainly see the “preaching to the choir,” and I get a bit disillusioned by this at times, particularly because the media with a broader reach (i.e. popular magazine coverage of eating disorders) is so often misinformed or outright wrong… sigh.

    • No idea why the weeks are different. It would be so much better if the ED organizations could, you know, talk to each other and work together.

      And yeah, the media coverage of eating disorders drives me NUTS!

    • The Dutch have it in yet another week, don’t know exactly when right now. I don’t think weeks like this are very influential, maybe the one thing they do is make ED less of a taboo subject for those who have ED.

  3. Oooooh I love me some eating disorder snark!!! Seriously, one of my treatment team once told me that the thing that most endeared me to the team was that I never lost my sense of humor. Pretty sure that’s how I survived. :)

  4. Every friggin’ week should be ED awareness week! Who’s it for, who needs it?

    It should be for school staff (teachers, counselors, nurses, coaches…), for Emergency room staff (the horror stories I’ve heard!), for pediatricians, for most medical professionals, for the general public. The hard question is how? And that’s my two cents!

  5. I think this article brings up a very good point and one that I have asked myself on numerous occasions. Since being in recovery I go between wanting to be pro-active in the eating disorder community and than trying to distance myself as far as I can from it (mostly due to frustration and lack of support) Ideally if I was queen of the world I would like to see ED awareness week be giving credit and attention to those who really have beat the odds and are truly in recovery from their eating disorders. I also think that this week should be about eliminating the shame and secrecy surrounding eating disorders – the more we talk about it and the more people in recovery talk about it – it may influence those who are suffering in silence to speak up and ask for help. I honestly own my disorders and I feel the more comfortable I am with it the more comfortable it makes others around me with it.

    Also spreading the message that recovery is possible would be another use of this week. Media campaigns on women and men who are in good emotional and physical recovery. There is a difference between not being active with behaviors and actually learning to have healthy relationships with food and a positive body image and living a full and happy life.

    Also in my experience there is too much emphasis placed on outer appearance and attempting to achieve a perfect model thin body when really that is not what eating disorders are about at all. My own personal story is one of abuse and trauma of which I used my eating disorders as a means to cope – it has very little to do with looking a certain way. I eating disorder became acutely bad after returning home from a deployment to Afghanistan. I would like to see more literature and information on the link between PTSD and eating disorders and what the root/underlying causes of them are. But again that is just from someone who has been in the trenches of ED and am now in full blown recovery after years of relapses and treatment centers.

    • I think everyone here would do a better job of making a quality ED Awareness Week than pretty much all of the stuff that I’ve seen.

      I kind of want to rename this week “ED Misinformation Week.”

      • Today I clicked on a link, which was supposed to be about “awareness”, though I’d already seen some comments on how it was off and then I just closed the page right away. I don’t even want to look anymore, it is just frustrating to see the same misinformation all of the time.

    • Wouldn’t it be great if we could turn it into a fund-raising week to get the research money we need that would enhance treatment of EDs. I think that ties into letting the public know the real ravages of the disease on the patient and the family. If they only knew it was a brain disorder with nobody to blame, like cancer, then maybe we could get a logo (like the pink ribbons for breast cancer) or get pharmacies to suggest at the check-out line that you give a dollar (like for diabetes) and get the research dollars we so desperately need.

      • Eating disorders are not simply brain disorders and are not at all like cancer. And we really do not need to fund raise during awareness weeks, particularly within pharmacies.
        The best way to educate the general public about the impact of eating disorders is to employ consumers or carers and establish a speaker’s bureau to provide a picture of their lived experience or by wonderful blogs such as this.

  6. From a positive perspective on eating disorder awareness week: my school had several events for the week a few years ago. I had relapsed but was not in treatment again. I went to all of the events because part of me knew I needed help. After one of the panel sessions, I introduced myself to one of the therapists and started treatment again because of that. I think that situation is probably an ideal one and should be a goal of eating disorder awareness week.

  7. I so agree, and so thankful to you for bringing this up.

    We’ve gone from not enough awareness straight to reviving every old myth.

    Stranger still, is the breathless tone of “OMG, it’s not about white girls who want to be pretty”

    Because just SAYING that over and over is keeping the myth alive.

  8. For me, ED Awareness Week is just as much about educating the public as it is about giving a voice to those who are struggling to find theirs.

  9. I would think “ED Awareness” would be aimed at making those who are unaware/ general public, aware of eating disorders. Or rather, “aware” of more than just their existence and some assumption they have of it perpetuated by the mainstream. At the same time, I don’t really know of many illnesses which don’t have some sort of perpetuated assumption to a point. As far as doing things differently….Separate it from all of the body image lover your body stuff! It is not the same!! Separate it from dieting and nutrition! Knowing those things will not stop a mental illness! Smashing a scale will not stop a mental illness! I think a lot of the time, people just do not want to think and want simple answers. EDs are not like that. There is no “one reason” and that scares people. Yet, trying to deny it or blame it on one thing does not make it so.

  10. Well I’ve been lucky enough to be invited to a couple of events which influential politicians will be attending. I’ll be trying to take the opportunity to make them aware of the fact that a “post-code lottery” exists as far as early diagnosis & treatment is concerned in the UK. Small steps…..

  11. I have spoken at several ED Awareness Week seminars for college students pursuing careers in nutrition and health science. One important population not mentioned in that email was health care providers. If those professionals know more about identifying EDs in an everyday patient, making it OK to seek help, I believe more people will be helped. Also, I think ED Week is a great way to help physicians learn that there are many faces to ED, not just the stereotypical thin anorexia patient. I was overweight the entire time I was deeply entrenched in serious bulimia. Health care providers play a critical role, and I honestly think ED Week should be directed toward them.

  12. I don’t think I ever liked EDAW. And now, running the SEDs blog, people seem to assume I am interested in raising awareness about EDs. But the thing is: Everyone is already aware of eating disorders. Who doesn’t know what eating disorders are? (Excluding you know, newly arrived immigrants or something.)

    We don’t need more awareness. We need more education. And the best way to educate people is through targeted education: Not just putting posters up, giving out pamphlets or pinning pretty pictures on Pinterest. It is about going to medical school classes and nursing schools and talking about the REALITY of eating disorders.

    We can’t educate everyone all at once. Why not allocate our resources wisely?

    • LOVE the idea of ED Education Week. And I have a half-written rant about those pretty Pinterest pictures for later today, LOL. Although, as a knitter, I loves me my Pinterest. ;)

    • Oh Tetyana, that’s the best idea I’ve heard in years!

      I work on the message boards, and the things that people’s doctors and nurses say to them would simply curl your ears !

    • I have to respectfully disagree that everyone is already aware of eating disorders. I work in an urban school and present in health classes on eating disorders and I have had multiple students approach me and say, I (or my sister, or dad or mom) have been doing these things for years but I didn’t realize it was an eating disorder. In minority populations especially the dialogue is not always there. Also, it’s very east once immersed in the ED treatment/awareness/research world to assume everyone already knows. I am part of a group planning NEDAwareness Week events, and one of them includes educating MD’s and residents via grand rounds at a children’s hospital. Often, hospitals and clinicians are more willing to feature an event like this if it falls within the week/month they are “supposed” to be doing something about it. This is not to say I disagree with some of the messages out there- especially how not wearing makeup is going to raise awareness of eating disorders BUT I think NEDA is moving in the right direction with a multi-focused approach to an awareness week.

      • In my opinion, NEDAW is a good time to inform parents about evidence-based treatments that are available, including Family Based Treatment (FBT) for children and teenagers with anorexia nervosa. It is also an opportunity to educate parents about the relatively low rates of recovery that can be expected when parents simply turn the eating disorder over to professionals and expect the professionals to resolve the problem without the parents needing to be involved. When parents are actively involved in treatment, assertively and confidently, rates of recovery are much higher. This means parents taking the lead in re-feeding a starving kid, and taking the lead in helping the teenager re-establish normal patterns of eating.

      • Laura–I caution you…”doing these things for years” doesn’t necessarily mean the individual has an eating disorder. Disordered eating probably, but let’s choose our words carefully. As someone who is clinically diagnosed according to the DSM there is a HUGE difference between engaging in disordered behaviors and having a full blown disorder. I hope that makes sense!

        • Kate- Do disordered eating behaviors not deserve to be acknowledged? I did choose my words carefully, as I didn’t say those people had clinically diagnosable eating disorders. I am not planning on diagnosing people via outreach and education activities but maybe these conversations will help them reach out to their GP for further discussion. As someone who has been on both sides, exhibiting behaviors that weren’t clinically diagnosable due to frequency or percentage of weight lost and then eight years of clinically diagnosed anorexia and bulimia I would argue that I was struggling and needed support regardless of “clinical diagnosis.”

          Also, dabbling in eating disordered behaviors and getting support before symptoms turn into a full blown disorder results in a much better outcomes, and if one person gets that support and is able to turn behaviors around, I feel like providing the information and education is worthwhile.

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