The point of awareness

Yesterday was the start of National Eating Disorders Awareness Week--the flurry of news stories and blog posts and tweeted statistics is pretty hard to miss if you're hooked in to the ED community.  The stories are all over the place, not just in quality, but also in message.  I started to think about NEDAW not from the perspective of a person with an eating disorder, but to try and think about it as someone who didn't know a thing about EDs.


And to be honest, I'm not sure what I should be thinking.

Eating disorders are caused by enmeshed families, by our messed up culture, by genetics and biology.  You can recover from an eating disorder, an eating disorder will always be with you.  Understand the cause of your ED to recover, just recover.

Huh?

It makes me wonder what the point of Eating Disorders Awareness Week really is.  Okay, yes, thank you, Captain Obvious: to raise awareness of eating disorders.  But I'm wondering what that really means.  I "knew" what eating disorders were when I was in middle school.  I would have laughed out loud if someone told me I would develop one in college, but still.  Most people probably know what eating disorders are.  The words "anorexia" and "bulimia" are on enough magazine covers and tabloids that people recognize them.

Of course, having a vague understanding of what an eating disorder looks like isn't the same as actually understanding what an eating disorder is.  My problem is that I'm not always sure that the information being published this week really makes any of this clearer.

I'm not anti-NEDAW.  I think we desperately need to spend time making people more aware of what eating disorders are, what recovery is like, and what issues are faced by people with EDs and their families.  Most people haven't a clue.  Compassion is a valuable--and rare!--resource.  We need more understanding employers and insurance companies that aren't douchebags.  We need doctors that don't say stupid things and family members who at least have a clue.

Nor am I sure that making people more aware of eating disorders will do much in the way of prevention.  Awareness of EDs has increased in the last few decades, and although the numbers are hard to come by, it's obvious EDs aren't decreasing.  There's the idea that once you learn what eating disorders are, you won't be stupid enough as to actually go and get one.  Doesn't work that way.  

What do you think? What aspects of EDs do you think need more awareness? How can we create this awareness?

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25 comments:

EmilyH said...

Hi Carrie,

It's true that you can tell some about an eating disorder, including the symptoms, the devastating long-term effects, and its seemingly epidemic impact on our society. Still, it seems without meaning or impact until you or someone you care about has to live with the eating disorder.

Like you, I knew what eating disorders were growing up, and, at the time, they were just words that were relevant to other people but not to me.

This question ties knot in my stomach everyday: How do we begin to beat the war against ED? How many victims does he have to take before our culture wakes up to seriousness of the issue? How long will sufferers live in hiding until they come out of the woodwork to force change? Will our culture ever change?

-Emily

P.S. Inpatient is going well. I hate the food, but I look forward to being able to do my own grocery shopping. I just feel a lot more positive lately.

Charlotte UK said...

Carrie

I agree. It is all very well being aware of eating disorders in a more general sense, but it doesn't help anyone who is involved, when no one can agree on anything.

It seems to me that there is no agreement on causes, diagnoses, treatments. It is a week where nothing gets done because everyone is saying "Pity the poor ed sufferer", which is not getting us anywhere.

There is no cohesion in this campaign. I see it here in the UK. Everyone stuck on how thin a sufferer got, how many bones you can count and how bad the magazines are. None of this is relevant. What is relevant is kicking some a**, clinicians, insurance companies, policy makers, ed charities, to make them get out of their ivory towers, where they sit arguing about semantics, and get on the ground to help people.

Rant over.

xx

Cathy (UK) said...

This is a really interesting post... Thanks Carrie :)

I have huge admiration for those individuals who do awareness and activism work, because I just cannot do it, as much as I want to help people. There are two reasons why I cannot do it:

1. I am a very private person in real life and a 'shrinking violet'. (This is not obvious from my online posts!). I prefer to remain 'behind the scenes' and contribute in a way in which I can retain my privacy.

2. I am ashamed of my long history of AN.... Maybe that sounds awful in some way, but honestly I am. I worry that people will pre-judge or mis-judge me. For many years I would not even read anything about AN. I didn't want to associate with it.

What I would like EDAW to be about is two things:

1. Dispelling popular myths and educating people that EDs are NOT lifestyle choices, that they are NOT about 'beauty', 'celebrity', or just desiring a thin body. Educating people that those with EDs struggle with a lot of fear and difficult emotions.

2. Improving detection, so that intervention can occur ASAP before the ED becomes entrenched.

IMO what EDAW is also NOT about is simply saying "I have an ED", or "I have recovered from an ED". It's not about sensationalist 'sob stories' in newspapers which people gawp at and say "how weird that person must be".

hm said...

1. Stats on eds- how many suffer, how many die. Begin by showing its seriousness b/c there are still those who think it's a spoiled, bratty person's diet.
2. Signs to look for, in children and adults. Emphasis on trusting the signs, not the sufferer. (Please- we all lie.)
3. Signs to look for in one's own self.
4. Structured how-to's for addressing a child, loved one, friend, student, patient if you recognize the above mentioned signs. Focus on insistence towards therapy and refeeding.
5. Links to informative sites and centers, for those who want to learn more.

The basic person doesn't need information overload on the genetics and the studies. They can research those things on their own- there's lots of great stuff available out there.

You have to start simple, or people will tune it all out b/c it's just too much to take in.

I'd love for this week to be an opportunity for groups like NEDA to contact service providers. Get the basic above information out to teachers, counselors, priests and pastors, doctors, nurses. To all service providers in any type of care industry.

My ed went undetected for decades b/c I smiled and insisted "I'm fine" and everyone believed me- I even believed myself. Perhaps if someone had trusted what they saw with me and then KNOWN what to do with it, I wouldn't be 36 and still pathetically entrenched. I finally bumped into a therapist who trusted her own instincts and insisted I needed help and healing in this area. Recovery would've been a helluva lot easier for me if someone had caught this sooner.

They hold staff inservices for a million things in schools and hospitals- how to recognize abuse, drug use, gang involvement, etc. Why not hold an inservice during NEDAW on how to recognize eds too, and what to do about them.

At best, send out reps to hold the inservices. At least, send out info. for department heads to pass out to staff members at a meeting.

Katie said...

The messages are definitely confused, but I think that reflects the state of the "field" of eating disorders as well. Everyone and their dog has an opinion and they are all trying to get them across by seeing who can shout the loudest! Like you, I don't think that awareness, education or societal change will stop people developing eating disorders, but I do think that proper education on how to spot eating disorders and what they are might lead to more cases being spotted earlier and treated more effectively. It would just be great if everyone could get on the same page!

I'm actually doing a talk at my old university later - I'll tell them what it's like to live with an ED, shoot down a load of myths, give them basic information on the current thinking about how they develop (just to dispel the idea that they are caused by wanting to look like Victoria Beckham!) and then talk about how I recovered. I've not had a LOT of experience at doing this but I like to think that hearing a personal message can make eating disorders easier to understand and destroy some of the stigma around them. Hopefully I'm doing a little bit of good :)

Rufty said...

As you and Katie mentioned, the field of eating disorders is not united regarding causes, treatment or even diagnoses, so I do wonder about the effect that such blanket coverage will have on sufferers, carers and the public in general.
There is no doubt that those with eating disorders suffer, but I wonder if by displaying these individual cases of suffering we are not doing as much to reinforce stereoptypes and stigma as we would if we had no campaign at all.
I have seen some God-awful articles that have blatently been put together for NEDAW by trawling the web for information. So, the public are being spoon-fed a diet of cobbled together information taken from sources unverified and at worst misleading.
The whole thing frustrates me, as I recognise the need for speedy and correct diagnoses but at the same time worry about the effect a misjudged article (with pictures, weights and an abundance of assumptions) has on the very people we are trying to protect.
I also fear that many people have just gone into compassion-overload when it comes to eating disorders when they are written of so frequently in relation to dieting, celebrity and fashion. In my eyes an eating disorder is more a symptom of a mental illness and there is a need to overcome the associations with frivolous facades; to instill a deeper understanding of the behind-the-scenes machinations. Maybe then the stigma will abate somewhat and the public may be open to thinking about eating disorders not in terms of size zero; young girls playing at dieting; fashion, models and pop stars, but more in terms of bona-fide mental illnesses.
Gah..I don't have any answers but I wish I did. Sorry, more a frustrated rant than anything else! I think because I don't fit the stereotype and have come across as much assumption and prejudice from the 'professionals' as I have the general public. I only wish my consultant could be as well-informed as we want the rest of society to be!

Anonymous said...

I wish the NEDAW had some manifestation in my college, but I think that people in the psychology department don't even know it's this week. I wish I had the courage to advocate it, but anxiety defeats me here... I'd be afraid of letting people know that I struggle with one. I think that alone reflects what we need to work in the most: less discrimination.

I've seen lately that if someone reaches out and asks for help for their eating disorder, others will treat the person like they're attention-calling and like it's something they wished on themselves. There really is a stigma, and comments like "pfft stop shoving your fingers down your throat" or "if you'd just go eat a cheeseburger..." are being thrown around.
That's in society in general AND in the medical community.

My dad is a doctor (and he actually works weight-restoring eating disordered people!) and his sole focus whenever I fall into the ED patterns is to make me gain weight and call it a week. He really thinks that that's all he should do, and he refuses to see beyond the physical. He ignores all the anxiety and low self-esteem that I'm sure play a part. I think doctors in general are like that, so I think we should work on integrating the psychology community with the medical community to increase awareness among those that could actually DO something about it (because doctors are more respected by people than psychologists.. medicine has been around longer so they are more credible... and if a doctor discussed EDs with the family of an ED'd patient, they'd be more willing to listen and to support them in treatment)

Charlotte UK said...

Cathy does amazing work behind the scenes. She is very patient at explaining with clarity and precision to someone like me who has no scientific training!

I couldn't agree more about early intervention. Why are we all so scared of intervening? Is it the last taboo? The reinforcement of malnourished women photographed in tiny underwear (why?) drives me nuts. You don't have to be thin to be anorexic. By the time you are, it is a long hard road back again. Bulimia sufferers are often not "thin" and Binge Eating Disorder is SO lethal. If I read another article or see another picture written in a patronising pitying tone, I will snap.

It is we, society, who have let ed patients down, by ignoring their suffering, not stepping up to the plate fast enough and making eating disorders either seem shameful or a "control" issue to be admired.

xx

Grrrrrr

Jen said...

I enjoy reading a post that questions what all of us are doing. Makes me stop and think.

Yesterday I watched the movie, "Temple Grandin." I am going to watch it again before I return it to Netflix. The knowledge about autism has come a very long way thanks to brave folks like Temple Grandin who with her own experience became (at first) a reluctant activist and went on to make a huge difference for so many people who would otherwise have been institutionalized.

Like the knowledge of autism, knowledge of eating disorders has also come a long way and needs to go further. An article in my local paper, I believe, points to the necessity of researchers "crosstalking" to find links. Here's the article:
http://azstarnet.com/news/science/health-med-fit/article_12850b51-33fd-5e31-93e0-befe5230db8d.html

Finally, one of my Facebook friends posted the little poem about the value of cracks -- they let the light in. The more cracks we can create in the hardened myths about eating disorders, the better.

Let's examine NEDAW and work to hone the process.

Thanks, Carrie.

Jen

azhe'n said...

i'm going to try not to repeat all the things which have been said and are all quite valid. i do have a wee rant. for those of us who have known of and suffered on and off with EDs for a number of years there came a point when a campaign for another medical issue came to the fore also referred to as ED. the first time i saw one of these commercials i thought "Well thank you God! Somebody is finally trying harder." until the whole thing ran and i realized they were talking about erectile dysfunction.
i can not seriously believe if this disease statistically affected men and women in identical reverse that we'd be where we are now. nobody will convince me of this. the fact that so much testing on diseases that affect women more are STILL being done on men makes no logical sense. so that's MY rant.
this week, combined with a few other somethings has gotten ME to talk about it again. not just blog about it but open my mouth with the tire jack and speak. shame for me is huge. i've gotten so good at hiding that i can go out in public, eat a meal like a 'normal' person and everyone just thinks i'm naturally thin. if they don't know that i've suffered with AN for almost 27 years now, they just wouldn't. they assume i should be dead. i have assumed i should be dead. an old mentor of mine who is an ED specialist who i finally called for help yesterday said in our conversation that it's bittersweet to hear from me because she hates that i'm not well again, but she knows i'm alive and that makes her happy.
so it breaks down to this, for me, this week. this is personal. the message this year to TALK ABOUT IT really did get me talking. and that may mean that i live and that my precious Mom doesn't bury her only daughter.
i can't fix the system, i'm not sure i can fix me, but i'm still trying and for now i'm aware that i can not even think i can do this alone. we live in a world of apathy. until we raise our voices which NEDA has given us full on permission to do, we will still be talking about all these problems with semantics 20 years from now. write your congresspeople, write drug companies, NIMH, NEDA, state representatives and keep using your voices. because if they aren't aware then none of these weeks of awareness are really worth much to the future.
for now, for myself, i am grateful because i did hear the message and i won't go down quietly.

much love to all,
azhe'n

TwirlingGirl said...

I totally agree. I think that awareness is really necessary for EDs, but I feel like what is being done is, to some extent, shallow. I was a very well-educated person, had friends who had mentioned they'd suffered from EDs, and had never had body dysmorphia issues,yet I still found myself struggling with EDNOS. Throughout my recovery, I've read a lot of memoirs, self-help books, and watched countless documentaries about ED, and they all tend to say the same things-- none of which speak to my experience. I think an effort needs to be made to show EDs (and I mean ALL EDs, not just AN and BN) as symptoms of larger problems. It's not just models who want to stay skinny, type-A girls who want to be perfect, or depressed middle age women who can't stop eating. Like all kinds of self-harm, EDs are behavior. I wish I'd known THAT sooner.

hm said...

Maybe I'm just a cynic, but I don't think the majority of people WANT to know what's really behind EDs. I don't think most people care. Most people who have a pre-existing opinion of ED sufferers as spoiled, dieting, and choosing it will continue to think such things even if presented with scientific truth. Most people who discover truth will discover it because they are LOOKING for it- they WANT TO know the truth and are actively seeking it.

I guess that's why I think an ED awareness week should focus on very cut and dried, concise info, such as stats, recognizing symptoms, and how to get help for yourself or for someone you think has an ED. Like how breast cancer awareness focuses on stats, promotes self exams, mammograms, etc.- simple how-to instructions with the purpose of increasing chances that women with early signs of breast cancer will be detected and treated, and the number of full blown cases of breast cancer will then decrease.

We in the ED community get into the intense (often emotional) battle over nature vs nurture and all of that, and the dialoguing and debating is great, healthy, and promotes understanding and learning. But for a broad based awareness week, I just think it should be kept simple if we want to make any sort of real impact. Use this week to open eyes and get help for people who might otherwise go unnoticed. Use the rest of the year to dialogue and debate about the details.

Focus on increasing early detection and treatment.

Charlotte UK said...

Shameless self promotion

If you can't say it yourself, you can always use this http://www.youtube.com/user/CandMedPRODUCTIONS#p/u/7/hJ_7SU0nzb0

Dude, where's the food?

xx

hm said...

Love the video, Charlotte! :)

marcella said...

hm, can I quote you when you say

1. Stats on eds- how many suffer, how many die. Begin by showing its seriousness b/c there are still those who think it's a spoiled, bratty person's diet.
2. Signs to look for, in children and adults. Emphasis on trusting the signs, not the sufferer. (Please- we all lie.)
3. Signs to look for in one's own self.
4. Structured how-to's for addressing a child, loved one, friend, student, patient if you recognize the above mentioned signs. Focus on insistence towards therapy and refeeding.
5. Links to informative sites and centers, for those who want to learn more.

The basic person doesn't need information overload on the genetics and the studies. They can research those things on their own- there's lots of great stuff available out there.

You have to start simple, or people will tune it all out b/c it's just too much to take in.

I'd love for this week to be an opportunity for groups like NEDA to contact service providers. Get the basic above information out to teachers, counselors, priests and pastors, doctors, nurses. To all service providers in any type of care industry. ?


I have been nagging poor Charlotte to work on videos for health care professionals and we have come to a bit of a halt over the question of emphasis. I agree that there DOES need to be a proper emphasis on nutritional rehabilitation but REALLY think that what is needed is a drumming in first of the absolute basics - with a hammer on the head if necessary, to doctors and nurse (and yes, Priests and youth workers and teachers and parents and anyone who is likely to have any influence on the course of someone's treatment).

hm said...

You can quote away. :)

marcella said...

Brilliant, thank you.

Cathy (UK) said...

Perhaps in future we called call it Eating Disorders ACTION Week?

I watched Katie (above) in action today and she was awesome. It was great to meet a kindred spirit in real life :) She inspired the audience and talked most eloquently and intelligently.

Cathy (UK) said...

I meant 'could' call in my comment immediately above.

Brain has died..

Jenny said...

"Of course, having a vague understanding of what an eating disorder looks like isn't the same as actually understanding what an eating disorder is."

Thank you for this. I've been struggling to find those very simple words.

Incredible Eating Anorexics said...

I agree with Cathy, and for the past few years I've said to Beat in the UK we should have an ED action week, not awareness. Awareness alone isn't enough, i can be aware of many things, i'm aware i need to pee right now, but until i take action and empty my bladder, nothing will change!

L x

Anonymous said...

I wish the awareness translated into more dollars for research. I read one of your Sunday links about the trivial amount of funding. With more research there should be better care, and we can finally put the old theories where they belong . . . in the garbage! Everyone should be given evidenced- based treatment not the old and common talk about how it's all about parental control - sigh.

Kendra said...

If I could be totally honest it bugs me when people jump on the band wagon of ED awareness when I do this EVERY day......I truly believe awareness is imporant, obviously, since I am an advocate. But one week makes me struggle. I also get asked "what are you doing this week" as if I need to do more. I fight this fight day in and out. I think I have seen way more info on stats and risk factors - but what about early intervention? You make a good point - we do NOT discuss this, and even research isn;t there on this. I dont know....I have struggled a bit to on this and have been having some similar thoughts as you.

scottrecovered said...

that is a great point you bring up, I am not sure how much awareness helps those who suffer, but I think that the more people that know ho common ED's are, the more they realize that it is an illness and that the sufferers need their support. At least I can hope that is what happens...

Thick Dumpling Skin said...

we recently started a blog for asians/body image/eating disorders called "thick dumpling skin" - for some people in this community, they don't realize they even have an eating disorder - it's just a part of the culture. i think having NEDAwareness is an effective way to change lives and open eyes.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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Have any questions or comments about this blog? Feel free to email me at carrie@edbites.com



nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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