The last week of February is National Eating Disorders Awareness Week, a week-long way to raise awareness of eating disorders, the devastation they cause, and hope for the future.
This year's theme is "It's Time to Talk About It," a notion I love because I'm all about talking about it, whatever "it" may be. Secrecy perpetuates bad feelings--let's get all the "its" out in the open. So I'm excited to be partnering with the National Eating Disorders Association to use that week to raise awareness and get people thinking in new ways--not just about eating disorders but about all of the crazy, disordered attitudes toward food and our bodies we hold in this country. This year I'm doing my part through Project BodyTalk, a web-based audio project I started two years ago to give people a place to talk about their relationships with food, eating, and their bodies.
If you're anywhere near the Syracuse, New York, area the last week of February, you can come to one of our open recording sessions. We'll put you in a private studio and let you record a commentary. You can choose to be anonymous, use a first name, or use your whole name. You can talk about something you love about your body, something you've struggled with, something you want other people to know about eating disorders--it's up to you. I'll be posting details on the sessions soon, but I expect they'll be held on campus at the Newhouse School, 3-8 p.m. every day that week. (Contact me for more info as the time gets closer.)
If, like most people, you don't live anywhere near Syracuse, or you can't make it to one of our sessions, you can still do your part by recording a commentary and sending it my way. Listen to some of the incredibly powerful and moving commentaries on the site for inspiration, and then make your own MP3 or MP4 file, or use a CD, and send it in through this handy web submission form. You can also hear an NPR program on Project BodyTalk here.
I hope you'll join me and Project BodyTalk this week for National Eating Disorders Awareness Week. Because you know what? It's really freaking time to talk about it.
44 comments:
I just want to say, firt of all, thank you so much for your wonderful, helpful book. It was so beautifully written and I got so much out of reading it and your blog. As for Eating Disorders Awareness Week's theme, "It's Time to Talk About It"-Yes! Lets! You couldn't be more right-it is time to talk about it, whatever "it" is. Secrets are bad. Secrets keep us sick. And I for one, was sick for way too long. As someone who considers themselves with one foot, nearly two! in that beautiful ocean we call recovery from AN, one issue that I'd like to talk about is treatment centers. Specifically, treatment centers and subversive behaviors that go on there. After all that I have seen, been through, read about and researched, I have come to the conclusion that using the Maudsley method in conjunction with a FBT is an excellent, compassionate, way to go. Unfortunately, its not always an option, and some sufferers do need to enter inpatient or residential treatment centers. When I was inpatient, I saw a lot of behaviors going on specifically designed to "get around the rules" or to "be funny" or to "make the staff mad". If anyone isn't familiar with what goes on in IP, check out the documentary THIN for an idea. At the time, my compliant, rule following self was appalled. But I realized, later, as I became nourished that I myself was doing the same thing, just more quietly. Wasn't I planning on restricting when I got home? Didn't I lie to my friends and family about my behaviors when I got there? So just because I didn't hide food in IP, or purge in the shower, or run away, or anything else, doesn't mean I wasn't subverting the system. The thing that I didn't realize until even later was that it wasn't my fault, and it wasn't the fault of those other girls. I didn't realize that we had a biological brain disease that made us unable to nourish ourselves. I didn't realize that my thinking, and their thinking had become so irrational and unclear and that although at the time I would have howled and protested at any mention of this: I was simply NOT in control. None of us were. The eating disorder was. What happens in treatment centers is that the eating disorder looks for holes in the system. Even if the healthy self exists somewhere inside the sufferer, she (or he) is being tortured to such a great degree by the ED that if she doesn't look for these holes and act on them, she feels extreme, intense anxiety. (cont below)
I think that this is what happens in certain individuals with perhaps more extroverted, outgoing personalities. For individuals like myself, who are more introverted, quieter, more given to rule-following, I don't think we look for holes in the system itself-we look for ways out of the system early, or we look for ways out of step-down programs. In this way, I believe that treatment facilities and residential facilities need to undergo an overhaul. The gaps need to be plugged up within treatment. It is my personal believe that family based treatment is the absolute best way to go, but unfortunately it is not always an option. Not all families are on board with this, and sometimes, people are forced to go to treatment. So, if a facility plugs up the gaps, and kindly, gently lets the residents know that NO eating disorder behaviors of any kind can go on, and explain exactly what measures are in place. In that way, the patients can relax-they won't feel comelled to try to find the gaps to use their ED because they know they can't. They might feel enraged initially, but eventually, the anxiety will decrease, and I know that I, personally, would feel much safer and more secure. As for someone like me-a rule follower-I'm not exactly sure what contingencies should be put into place. I only know that I was so quiet, so compliant in treatment, that everyone loved me, I went through the program smoothly, and promptly relapsed two seconds after getting home. So-any suggestions would be appreciated. In addition to undergoing a "plugging up the gaps" overhaul, I strongly feel that treatment centers in this country need to become more generally accountable. From my understanding, the recovery rates from these centers are abysmal. They release patients at weights that are far less then optimal. Its understandable that not every treatment center is going to have the same philosophy but shouldn't they at least be required to provide research-based evidence for that philosophy?
I know this is kind of long-thanks so much for reading!
Thanks for your thoughtful comments, Jamie. I agree with you all around. Treatment centers need to be accountable, and need to use evidence-based treatments. Insurers need to cover treatment. Families need to be mobilized and empowered to help whenever possible.
And you're so right about secrecy!
Here's to two feet in the ocean of recovery!
Jamie, thank you for your comments. I'm a parent and I just returned from Family Week. It has been my observation, as you've also noted, that there will be people whose ED is looking for the gaps and that many return to their family and immediately after or shortly return to their ED.
Others don't. The question is why?
I'm inviting you to offer some solutions here because so many read Harriet's blog. What do you see as a way to help the person stay strong?
I agree with Harriet that insurers need to cover treatment but more than that, I think insurers need to cover at least six months of comprehensive treatment and that step-down is vital. A transitional setting is vital and is often lacking, many times because the person in treatment just cannot wait to get out and refuses to stay the course in treatment. Coverage is vital -- did I say that already?
And..... the family needs to be totally involved in this process of change, even if they need to change as well.
Somehow those working with our loved ones need to elicit the feelings and drivers that you have mentioned -- following the rules but returning to ED the moment one leaves.
To get one to talk about it means that the therapist needs to gain the trust of the person and dig deep. To provide the person with alternative means of dealing with whatever comes up.
I know there is an answer.
I'm here to talk about National ED Awareness Week. For those of you in the Washington DC area, you can come and participate in the NEDA walk down there on Febuary 20th from 11am to 1pm (not sure about the 1pm but I'm basing that off of other walks in the past) So if you want to register, here's the link. I'm going to try my best to be there also. Hope you guys can come also, There are walks in other areas also. Just check out the link.
http://www.nationaleatingdisorders.org/programs-events/nedawareness-week-walk.php
this is just the general page that lists all of the places that the walk will be taking place.
You just click on "Register Here" under the walk you want to participate in.
Jamie, I don't think it is fair to lash out to treatment centres. If I am not ready to let go of my ED, no matter who or what is trying to help me, I will have a relapse as soon when I walk out of the door. The disease will win, no matter what, until I am ready to surrender. It is like any other addiction. Total surrender is the key.................
One place that worked for me is Anorexics and Bulimics Anonymous
http://www.anorexicsandbulimicsanonymousaba.com
Anonymous, that's one way of looking at it. I look at it a different way: The illness's cognitive distortions make it very very hard for a person with anorexia especially to see and experience reality around issues of eating and body image. There's a powerful neurobiology at work, and it takes a lot of physical healing to even begin to overcome it.
Anon-I'm not lashing out at treatment centers, simply stating, based on statistics that show that individuals who go IP having high relapse rates, that clearly something needs to be changed.
You said "If I am not ready to let go of my ED, no matter who or what is trying to help me, I will have a relapse as soon when I walk out of the door. The disease will win, no matter what, until I am ready to surrender." I respectfully disagree. I believe that until you have received full nutrition such that your brain can heal, you won't be able to rationally choose recovery. The disease will win, not because you aren't ready to surrender, but because of the simple fact that your brain and body are malnourished to a degree that you are unable to think clearly and make decisions for yourself-such as the decision to give up the disease. I strongly feel that if we wait for many, many people to be "ready" to give up the disorder, they will die. This needs to change. However, if Anorexics and Bulimics Anon worked for you, and you are in solid recovery b/c of them, then I am truly happy for you. For others out there who can't seem to get a handle on their disease and feel that it is their fault, and that they just aren't ready, this is where I feel that treatment providers and treatment centers need to be more on board with insisting that the looking for the "whys" of the disease can wait-it is the "whats" that are paramount initially-the basics... consistent food, rest, meds, support. All the rest can wait IMO.
Jen-I've been thinking and thinking about possible solutions, and I do agree that the family needs to be much more involved in treatment when the person is in IP. I have a bunch of ideas, but I need to get them gelled in my head a little better! I will be back :-)
Harriet I agree with "that it is very hard to see and experience reality around eating and body image for those with Anorexia" (and Bulimia). Even though I am in recovery of bulimia for a while now, I still have moments that I don't see reality. When I look back, I am shocked and amazed of what I thought was reality and what actually really was true. With regards to the healing; I believe that it not only takes physical healing, also emotional, mental and spiritual.
Jamie, this is a subject that I find is not easy to respond to via a computer. There are things I agree with that you wrote......
ED is a very challenging and complicated disease and there are many different ways and forms that can lead to healthy eating practices (eventually). It takes a lot of hard work, healing on all levels, changing ways of thinking, letting go, surrender just to name a few.
It really is often very sad and emotional for those who are going through ED. I bet most of us or generally those who read blogs like these are in need. There's really nothing wrong about getting help. I just wish everyone would be most understanding to those who are struggling coz it's not easy.
Anon#1
Totally agree with you Ms. Marvel. I think you summed that up pretty well. EDs are tough to deal with and we all need someone to talk with about it or know that they are struggling too. Not everyone understands my struggle but those who do, are the people I'm most thankful for.
Hi Harriet,
FYI
I just came upon this read
" Manorexia". Man dealing with ED. It is a good and interesting read. Maybe something to post on your blog?!
Thanks,
Hetty
Thanks, hetty!
I myself was a bulimic in high school. It was mainly because of peer pressure. It was hard...and it really felt bad emotionally. I even got hospitalized twice because of it. I was just lucky to be over it now after I joined a school organization when I was in the university already. It taught me how to love myself as I am.
-Faith
It's so wonderful that you are recovered from your ED now! That is so great! That makes me so happy. It's nice to hear from those recovered from their EDs because it gives me hope that someday, I will recover from mine also.
-Anon #1
Oops, here is the link of what I was reading about Manorexia.
http://www.canada.com/topics/lifestyle/style/story.html?id=ec90796d-fe6b-424d-bf7e-9e574366794e
i read this when you first put it up and thought, oh my God, i can not do that. too scary and too completely naked for all the world to see.
i've read through the comments and feel compelled to say a couple things. deciding you're going to stop the eating disorder (at least for me) has not worked. i am 41 years old soon and have been afflicted with anorexia since i was 14, but undiagnosed a lot younger than that. i have done years of therapy, been in treatment once because my healthcare considered it a fail when i needed treatment again so i didn't look to them to ever go back again. (i'm in the VA system.) i've tried just about anything i can get my hands on and at the end of the day, the monster is still in residence in my brain and i fight for every bit of progress. i do NOT consider myself a functional anorexic because the implication is in my free time i tra-la-la without any consideration of food, weight, and all the other symptoms of anorexia. i exist and operate but this is not the same as functioning. machines function,humans are meant to live.
for now i have to believe there is a reason for all this. i know there are people who judge because of my age and i'm blessed that i don't look as old as i am otherwise i'm sure it would be worse. there have been times when i thought i was completely recovered and then something happened and my world shattered again.
i wish i had the answers. what i do know is that secrecy can not work. leaning on other human beings is normal even though everything in the afflicted's mind says NOT to talk about it or ask anyone for help because we're simply not worth the air that every other animal on the planet enjoys. the secrecy is ultimately a recipe for death. i fight this every single day because it's just not my m.o. to let people into a brain that is so obviously flawed in so many ways, to me.
so i write for now, even when it feels horribly self-centered and i hope that maybe someone will read and know that there is no judgment (at least from me) about how old, how long in treatment, what methodology. the only thing i hope for is health and peace for all those suffering, families and friends included.
with love and gratitude
Dear Azhe'n,
What you have written is beautiful and terrible in its truth. It's such an important message. People need to hear and understand the realities of having anorexia and other eating disorders. Doctors need to hear and understand and push for better treatments. And you need to remind yourself and forgive yourself for something that is in no way your fault or responsibility.
I'm so sorry you've had to suffer for so long. I'm so glad you've shared even this tiny bit of your story. I would so much love for you to record a commentary for Project BodyTalk, completely anonymously, because I think more people need to hear what you have to say.
With love,
Harriet
Harriet,
I love you blog!!! I think that everyone know at least one person in their life who has an eating disorder. So many times people are hush hush about the subject but I agree with you. It is time to talk about eating disorders. We need to bring them out into the open. Let people know that they are not alone in their fight with their disorder. I currently have a blog that I am working on for graduate work that is about bill H.R. 36 which is awareness and prevention of eating disorders. I am really passionate about this subject and would love to get this bill passed. Thank you so much for everything you do in the effort for eating disorders.
Thanks, Anon. Send me a link to your blog!
Where are you Harriet? Hope things are all well with you and your family.
Thanks for checking in, Anon. We're having a bit of a rough patch--hence the long silence.
Through your blog and book, you have been so supportive and resourceful to others. Most understand the waxing and waning through ED issues; it's okay to get a little support from others who are your blog readers and cheering parents. Be brave, Harriet. Sending positive energy your way:)
Hi Harriet!
I hope that you and your family are doing better (see the last post you responded to). I'm here to share that I'm starting to take steps in my ED recovery I never thought possible! A lot of my ED behaviors are going away which makes me super happy! Thanks to your book (Brave Girl Eating), I feel that I can recover from my ED! Your book gives me so much hope and I'm realizing that a life without ED is actually possible. So thank you from the bottom of my heart!
After a long battle, my insurance company is starting to cover my ED treatment! My wish for anyone else suffering from an ED is that their treatment also gets covered. It's so sad and fustrating how hard it can be to get insurance companies to cover ED treatment. Hopefully by spreading ED awareness, insurance companies will start to cover treatment with greater frequency. Also,by your work spreading ED awareness, I have decided that when I grow up, I would also like to advocate and spread awareness about EDs so people know they aren't alone.
Hi Anon 1,
Thank you for the kind words. I'm thrilled to hear you're taking steps, and honored to know my book has helped you. It really really does get better. And you really aren't alone. Keep me posted!
Anon 2, congratulations on the success with the insurance company. I agree that awareness is key. I hope your recovery goes as smoothly as possible. Take care of yourself.
Harriet,
as you know your book and my relationship with my own Mom are what got me moving from a dark place. it is so scary to me that when one is 'in it' we just don't realize how bad things are until it's out of hand. i'm making little steps forward, have about half a treatment team now as that was approved, Mom has been helpful when i can fight off the thing in my head to ask for anything (it was help with a meal plan so that was a pretty big deal) and it seems like we've kind of figured out the AN has served to tamp down a lot of anxiety since i was a kid. biologically my pulse runs tachy, like 80 when i'm really fit and 100-110 if i'm not exercising, so we're almost positive it's a stress response since the last time we did an ECG it all looked okay.
now it's back to refeeding which feels shameful and like i'm stupid. i'm fighting back with logic knowing that it's never square one, it's just learning more. i have always promised if i figure out something miraculous i will share.
so much love...
It is scary to think that you can't trust your own perceptions. I'm so glad you're moving forward with a team. Refeeding isn't shameful and you're not stupid--you're an extremely brave person. The people who know what you're facing respect you immensely for it. Hang in there.
Hi Harriet!
I am here with my update!
I talked with my nutritionist and she has decided to keep my parents eating meals with me. :-(
I don't really like the idea but at least eating is getting easier for me so it's more manageable than before. I also have to keep with the family therapy. :-(
Still, I think all of the family meals and therapy are worth it weither I like it or not because of all of the wonderful improvements that I am seeing in myself.
I guess miracles do happen. I never thought I would recover from my ED and here I am taking HUGE steps in my recovery!
What a great update, Anon. Your nutritionist has made a wise decision. Remember that your parents love you and their goal is to protect you until you can protect yourself. That day will come. Meanwhile, the faster you get through this, the sooner you'll feel better. I'm rooting for you!
Hi Harriet!
I totally and completely agree that it is time to talk about it. Secrets can tear us apart mentally and emotionally no matter what they are about. It's just not healthy to keep secrets, period. I kept my ED a secret for way too long because I was too afraid that if I told someone, they wouldn't believe me or they would make light of it. The truth is, after I gathered up the courage to speak up about my ED, things started getting better for me, not worse like I originally thought. My friends and family are so supportive and I have no idea where I would be if I hadn't told them. Sure it's scary to share your secrets but it is something that sometimes just has to be done. I know for a fact that if I kept my ED a secret, I wouldn't be where I am right now.. recovering from my ED. So yes, I agree that it is time to talk about it.
Hey Harriet!
I felt like leaving another update!
I'm doing better with eating everyday which makes me super happy!! My nutritionist and I came to the decision that my parents only have to come to school to eat lunch with me 2 times a week opposed to the usual 3 times a week! I get to go out to eat on Saturday with my sister and my parents aren't going to be there to supervise my meal!! I'm so excited and I feel that this will go very well for me! I have to start intensive family therapy in 2 weeks which I'm not so excited about. I do have trouble communicating with my parents so I guess that this would be a good option for me eventhough I'm not totally up for it. Oh well, I guess beggars can't be choosers.
I'm really happy to hear that! I think good family therapy can really help, and I hope it helps you communicate better with your parents. Hang in there--it really does get better.
It's really sad how people can see themselves as fat and ugly eventhough they are so beautiful! I'm in a dance program at my school with all of these beautiful and talented girls. I hear them all the time in the dressing room talking to eachother (more like venting) about how they need to go on diets and loose "all that flab". They constantly put themselves down because they don't think they are "pretty enough". There's this one girl who is so thin and I'm just so concerned for her health. You can see practically every bone in her body. It's just so scary. She calls herself fat all the time and she thinks she is a pig. I've tried many times to convince these girls that they are beautiful but it's not sinking in. I wish all of these girls could see for themselves just how beautiful they really are. I have so many Operation Beautiful sticky notes that are waiting to be used and I think I know just where to put them.
Hi Harriet!
I hope you and your family are doing well.
Quick update - As of a few days ago, I am now allowed the wonderful privilage of being able to eat lunch at school without supervision!!! Yay! My parents approve and so does my treatment team so I'm just extremely happy!! This greatly increases my chances of being able to go to camp this summer! The camp is for a week and is far from where I live so my parents wouldn't be able to come and supervise me. I don't think I will need supervision at the rate I'm going!
I'm so glad to hear it, Anonymous. Good for you! And thanks for keeping me posted. Keep it up!
Hi Harriet,
I hope you are doing well. I have another update to share with you! Guess what... starting tomorrow, I get to help decide what I want to eat for most of my meals! This means that my parents won't have to decide for me anymore! I'm so happy! Hopefully this will work out well. Wish me luck!
I'm thrilled to hear this, Anonymous! Yay you!
Thank you so much for your book, I found it in my local library the week we brought our daughter home from her university with an eating disorder in January. Reading about what happened to your family and about the brave stand you all took in battle against this malicious disease helped us in ways that I cannot begin to describe..even with the professional treatment we were/are getting it is so comforting to read that someone else has been through this. The book really saved my sanity and helped my daughter. I wish you and your family all the best. You are getting all of my good vibes--I hope things are getting better.
From a mother in southwestern Ohio
Anonymous, I'm so glad the book has been helpful. Even with the best professionals in the world, you need to know you're not alone and that other people just like you have gotten through it. You'll get through it. Your daughter is very lucky to have you. :)
And thanks for the good vibes. Things are indeed getting better.
Hey there! :-)
This is anonymous #2! (I'm the one who gives ya updates!)
So... today I did something I never would've seen myself doing a few years ago. I ate some donuts... I actually ate more than one and there was no fear, anxiety, guilt, shame or regret. All of those feelings are now gone. Believe it or not, I really enjoyed eating the donuts and I can't believe I did it.I feel wonderful proud and very happy that I made the decision to eat something I used to fear. I believe I have come a long way.
You have, Anon 2! Hooray for doughnuts!
And hooray for eating without fear or shame or regret.
I'm proud of you!
I am looking for a speaker on this topic for July 20th 2011 in Akron, OH. Do you know where I can look? It is for adult women 45 and over. I work for Jewish Family Service of Akron.
Hi Nancy,
I do a lot of speaking on the subject. What kind of event are you putting on? Do you have a budget? Feel free to email me offline and we can trade possibilities. harriet at harrietbrown dot com.
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