A prevention picture is (not) worth 1000 words

As a knitter and crocheter and generally crafty-ish person, I love Pinterest. Since many of my friends are associated with the ED community, I also get plenty of ED-related stuff in my Pinterest feed. Some of the inspirational stuff I like, some of it just kind of goes in one ear and out the other. It gets drowned out by all the knitting patterns I need to try.

Now that it’s ED Awareness Week, the amount of ED infographics and images on Pinterest and elsewhere has exploded like you wouldn’t believe.

Secret: I love infographics. I did graphic design on my college newspaper (it was a really small staff, so I did the writing, editing, and layout of my section each week), and I enjoy thinking about how to present information visually. So I don’t object to infographics in and of themselves. The problem is the content of these infographics and images.

I have two that I’ve seen shared repeatedly that I kind of wanted to dissect here.

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Here’s the thing: the top 2/3 of the graphic has NOTHING to do with EDs. It’s about dieting and body image. That’s not an eating disorder. It’s like saying you know what it’s like to be decapitated because you got a few paper cuts in college. NOT THE SAME THING. And so much of the information being circulated for Awareness Week just focuses on dieting and body image. Save that stuff for National No-Diet Day or Positive Body Image Week.

Here’s another one:

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Again, nearly half the list has to do with dieting. And it kind of contradicts itself. The second point says that anorexia is 50-80% determined by genetics (which isn’t exactly an accurate way of putting it, but still) and then it goes on to talk about dieting and body image. It’s like “celebrating” depression awareness week by playing “Don’t Worry, Be Happy.”

After having several conversations with people about this yesterday and today, both on email, Twitter, and in blog comments, ED Awareness Week irritates me because (I can’t believe I’m saying this) it seems so damn pointless. Yes, there are lots of opportunities for people to share their truths, and SING IT FROM THE ROOFTOPS, PEOPLE! But “awareness weeks” seem to be more about campy ways of patting each other on the back and preaching to the choir than actually making a difference.

We avoid the hard issues: people who are dying because they can’t access care, people who are having to crowd-fund live-saving medical treatment because there aren’t enough beds, treatment centers who kick people out for having the bad fortune to struggle during treatment. People who don’t get diagnosed because they don’t “look like” who we think would have an eating disorder. People who receive abysmal treatment, families who are torn apart, providers who should know better. The fact that treatment costs a literal fortune. The fact that physicians have nearly no training in EDs, and psychologists who are still learning the old tripe that EDs are about controlling mothers.

We should be pissed off. We should be doing something.

It’s not the kind of thing that lends itself to nice Pinterest-friendly infographics. It’s an ugly truth. It’s still the truth. We will have to risk offending some of the groups that donate money. Websites will have to be rewritten, content modified, education received. It’s inconvenient. Well ain’t that just too fricken’ bad. People are DYING and all we can do is make pretty pictures and talk about how we should love our bodies? That’s it? That’s the best we can do?

As Tetyana from Science of EDs commented this morning:

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?

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22 Responses to “A prevention picture is (not) worth 1000 words”

  1. You put your finger on exactly what has been distressing me. I haven’t been involved in this world long and last year my daughter was relapsing, so I didn’t pay attention to NEDAW. It’s really bothering me that some of this is coming from NEDA. I feel like I have a lot to learn about how things work and where to focus my advocacy and activism.

  2. Carrie, I would love an infographic on EDs that deals with the hard issues you outline.

    Wanna be nostalgic, pretend you’re on the old college paper, and make an infographic for us all to enjoy and re-distribute?

    • I agree with Anne, a REAL infographic is a good idea.
      I’m sure people here would be happy to give feedback if your willing to give it a go.
      You could send your final copy to NEDA with your thoughts and perhaps back them up with comments here.
      Willing to give it a go?

  3. I agree, am infographic about EDs by you would be awesome and accurate and I’d share the heck outta it!

  4. This is just amazing Carrie. I could not agree more and I have been thinking all of this but had no way to articulate it and you are SPOT on. Everyone know’s ED’s exist… they just don’t know the reality of them.

  5. I’m a doctor: the biggest prejudice and misinformation I face comes from my colleagues. We need some serious training

  6. As the mom of a patient, C, I totally have found that what you say is true. I have to come armed with information and ready to educate the physician. I’m glad to say, though, that some are gracious and glad to learn. My daughter’s pediatrician, who pooh poohed symptoms of starvation (dry skin, constipation, dizziness) in the months before the ED diagnosis (despite a months-long plateau in weight) and then said “little girls get skinny” when I went to her office the day after my little one told me she couldn’t eat or drink because a mean voice in her head wouldn’t let her, later poured herself a cup of coffee and watched a lecture by Dr. Peebles that I sent her via email. So, some are willing to learn.

  7. I have been asked to write a newspaper article for our local youth mental health organization. They are hosting a “Body Image and Eating Disorder” night in April. I love the idea and personally know the guest speaker, she’s incredible. I will also be there to speak about the impact on families. My struggle is – putting in 500 words or less the information that so desperately needs to be heard.

    Your blog is brilliant Carrie! Thank you for so eloquently putting in words how I and many others have been feeling, especially this week. Personally I am finished preaching to the choir and will be demanding a whole new audience.

  8. Nothing will change and no one will get better until insurance coverage changes. Insurance coverage won’t change until treatment centers stop gouging patients and suffers. Its a merry go round. Tell me why it cost 3000/month for a shared bedroom with night time supervision anywhere in the country? If centers wanted to help patient they would just cover their expenses on housing . They are making a fortune on the treatment already.

    • Oh Joan you are so right about this ! Perhaps it’s un-American to complain about the cost of things (“How much do you really love your daughter ?”) but $1,000 -$1,500 a day is simply too much for treatment! If insurance can be made to pay, then a person is fortunate, but even then it’s still draining off money in a way that encourages insurance to fight payment for the next person who comes along.

      My sense is that many of the advocacy groups receive considerable sponsorship support from treatment centers, so is this something that these groups would be willing to speak up about ? It’s wonderful that the advocacy groups support insurance reform, but the world (and even insurance companies) are not made of money, and as long as costs remain what they are, and despite the good intentions of mental health parity reform, people are going to continue to have problems getting treatment.

      • Bob you and I are on the same page. It just makes me ill listening to some of the centers saying its all about the patient. Not only is the residential care ridiculous, but they never fellow up on what they tell you on the phone(sales call is what it should be, vs. admission director) and what actually happens when your their. And everyplace is the same, so you have no options. Drain your life savings or let your child die. This is where the real education and change needs to start.

  9. Carrie,
    Well put. We need to raise the level of education. I am just getting my feet wet as an activist advocate parent whose daughter is actively in treatment. I am trying to educate my circle of friends, family, and medical professionals one at a time because the ed messages at the national level seem to get confused with dieting and body image as you so eloquently point out.

  10. I totally agree that education is the goal. For health care professionals (pediatricians, nurses etc.) you might want to go to the AED web site, download the ED Guide to Medical Managent and ditribute them. For family, friend and the general public you might want to lead them to the F.E.A.S.T. Family Guide series. Currently there is a guide to the neurobiology of ED’s and a Treatment Guide. Soon you wil also find a Diagnosis Guide and a Medical Management Guide. Educational materials to share!

  11. Thank you!!! So well said!!

  12. Carrie, you rock!

  13. This is so true. Thank you for calling it out. I have avoided all things EDAW-related this time for these very reasons. This is about the only EDAW discussion I’ve read (whew, I made it through), and it’s exactly what I wanted to read!

  14. Yes, yes, yes, yes, yes. This!

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  16. I love your blog. Would you like to check out mine? :)

  17. I like your post very much i had nice time while reading your post

Trackbacks/Pingbacks

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