Ed Myths --- Please share your thoughts!

I am doing an upcoming workshop with Rebecca Bass, LMFT, and Megan Holt, MPH, RD in Carlsbad, California called "Myths & Meaning: Recovering from an Eating Disorder."

This title got me to thinking that I would love feedback from you guys about the myths that you have experienced (or continue to experience) along your recovery journey. What myths about eating disorders have people told you that negatively impacted your recovery? Or what myths does society believe about eating disorders that have impacted your walk along recovery road?

For instance, I used to believe the common myth: Only people who are apparently overweight or underweight may have or will have eating disorders. Since I believed this myth, I didn't think I deserved help for my eating disorder when I looked normal. Of course, the truth is that people with eating disorders come in all shapes and sizes, every number on the scale.

Some common myths about eating disorders that impacted my recovery are listed on my website: http://www.jennischaefer.com/truth.php

What is your experience? Please share any and all thoughts. Your feedback will help me a lot and is much appreciated.

Thanks for your help!

Jenni

---
For those of you who live in or around Carlsbad, here are event details:

Saturday, June 27th
9 am - 12 pm
Carlsbad Senior Center
799 Pine Avenue
Carlsbad, CA 92008

The event is free and open to everyone. Donations will be accepted for those who would like to contribute to the National Eating Disorders Association.

RSVP to Melanie Aldis at maldis@centerforchange.com.

EVENT SPONSORED by CENTER FOR CHANGE and POTENTIA FAMILY THERAPY, INC.

Comments

[Sari Shepphird]

Hi Jenni, Here are some myths, in case it would be helpful to you.
http://bit.ly/77Bis

Best, Sari Shepphird

[Amelia]

Another societal (or maybe just personal?) myth that I always told myself (and kind of assumed from others I guess) is that unless I was hospitalized or in medical danger or had done an IP/Residential treatment (or even IOP) then I wasn't REALLY sick.

[ellie]

- weight gain = recovery
- you can't be a normal weight and have an eating disorder
- you can never truly recover from an eating disorder
- inpatient treatment is a cure and there is no reason why things should be 'difficult' once discharged
- only low weight people die

I'll come back if I think of more- it's late here and too tired to think! Hope these make sense...

[Sandy]

Just a personal observation- I think the thing that (for me) makes it difficult to let go of some of these myths is that they are perpetuated even by those in the medical field. Which leads to a whole other issue of our pious faith in those in the medical profession... But that issue aside, I can't count the number of times I have heard personally, or heard someone else's account of a completely ignorant comment from a so-called 'professional'.

[Shea-Marie]

~Once I got out of residential treatment, things were going pretty well. But the first time I had to go back to the doctor he said to me "Come on, you're going to be twenty years old, just give it up already...you're too old for this" in a very rude way.

~I was once talking with a woman in her mid-forties who was actually a health teacher. She told me that anorexia is a child's disease, and once you are over 18, you can't get it.

~People with eating disorders just want to be skinny. They don't care about anything else. They are so selfish.

More doctor comments:

~"She's over ___ pounds, she can't be suffering from an eating disorder, she's not malnourished."

~"Her blood work was fine last month, there's no need to check it again."
---My therapist was so mad because I ended up collapsing that night. When you are struggling with an ED, your vitals can change SO quickly.

"You don't look like you are struggling. You are doing fine."

-when I got out of residential, my doctor said..
~"Oh good, you look so much better..you don't need to see a therapist anymore."
**(umm when you get out of such a safe and secure environment as residential/IP...you DEFINITELY need to stick to a therapist AND OP treatment team. The real hard work starts after discharge.

~"The only way to be diagnosed with an eating disorder is if you fit ALL the specific criteria in the DMS."

[sara]

I really agree with the first myth on your website that its about food and weight, which gets to another about having to "look" like you have an eating disorder. It is so much more than that.

One I have come across lately, getting my PhD, is that people tell me I am too smart to still struggle. And, that if I was really as smart as I appear to be, then I should have any issues. I am in a social science field that deals with at-risk youth, those with disabilities, those with different psychiatric disorders, and so forth. So many times, I wish they would apply their work to the world. But, yes, a myth that I have faced--even by my nutritionist--is that I am too smart to still struggle.

[Karen]

I also agree with everything that's been said in the article and the responses. Here's a few that I would like to add:

If you're starving, you must be hungry.

Treatment involves slowly getting the patient to eat.
---Man was I in for a rude awakening. I must have picked this myth up from television and was honestly expecting to be slowly "nursed" back to health. Instead, the treatment center greeted me with full-course meals 3 times a day, plus snacks, and the option of a feeding tube. Not easy for the average anorexic. I don't think the average person understands just how painful the re-feeding process is.

And here's one for the family and friends:

My mother blamed herself for a long time after I came down with an eating disorder. I have told her time and again that what she did or did not do was not not "the cause" of my eating disorder. There are many underlying factors that lead to the development of an eating disorder. No one factor is solely to blame.

And as others have mentioned - there is the myth that a treatment center will "fix" their children or loved ones and return them as they were before upon discharge. As hard as it was for me to deal with this myth, I believe it was equally hard for my family. Yes - I came back at a healthy weight, but emotionally? Recovery is a long process. Just because you look okay, doesn't mean you are.

And here's some that I've heard about, but not experienced:

Most Men suffering from eating disorders are either gay or wrestlers.

And I definitely experienced these first hand:

If you don't meet all of the criteria, you don't have a problem.
--My mother took me to the doctor, suspecting a possible eating disorder a year before I was finally diagnosed. At the time I was still at a healthy weight, so I was not diagnosed. A year later, the same doctor diagnosed me with anorexia, because I finally had at least 3 of the criteria.

You're not skinny enough to be sick.

You haven't been hospitalized, so it's not serious.

I know people who exercise as much, or more than that, so what's the big deal.

It's all in your head. Get over it already.

[HR]

myth: people with eating disorders don't eat, or if they do eat, they only eat lettuce, cottage cheese, and celery.

I'm anorexic and have gone through phases of eating 2,500 kcal/day, and NOT through bingeing. I just exercised it all away...

[Rachel]

A big myth for me is, "If you look fine, you must be fine." Now that I am a healthy weight and have been for a while, people (especially my family) like to think I no longer struggle. This makes it hard for me to be real with them, and it also makes me feel like there is something wrong with me--if I LOOK recovered, why do I not FEEL recovered? Why am I not happy?

[Katie Cullinane]

I agree with Ellie - I don't know much about treatment in the USA, but in the UK people are only admitted to inpatient units if they are on death's door, severely underweight or purging so much they are at risk of organ failure. Even getting referred to specialist OP treatment is hard if someone is not underweight. The medical profession over here really does reinforce the idea that if someone doesn't have an extremely low BMI (normally 13.5 for IP admission) then they are not sick - and once you gain the weight you get discharged from therapy very quickly too. It's very frustrating.
On an aside, your book is helping my recovery so much :) thank you!

[Jenni Schaefer]

Wow! Thanks for all of the wonderful feedback. You guys are great!

[Kristine Tippen PhD]

I believe another common myth about recovery is that it is a linear process- if you are "successful" at your recovery you will have no slip ups, no restriction, no binges, etc. If you do, then you have failed and your recovery is flawed, over, botched. In fact, the opposite is true. Most recoveries look like a roller coaster with many ups and downs along the way. That is normal, a slip up does not mean you are not invested in your recovery or making progress. I think people with an ed as well as family members/friends believe this adding pressure to the recovery process which is already, as we all know, a tough journey.

[Alicia]

A common myth that I believe is really hard for people to grasp is the idea that EDs are not solely about weight! I recently just returned to work and am getting all of these comments about how wonderful I look now that I've gained weight and that I 'didn't need to do that to myself.' Well I know I didn't need to starve myself to lose weight or look good but there's so much more to it than that that people don't even realize that I can't begin to explain to them! I'm sure most people who are in recovery have experienced this but lately it's just been a huge trigger for me so I thought I'd share!

[Mary Lynn.]

I SO agree with Amelia- Unless you've been hospitalized or being sent IP, you're not really sick. This was actually a HUGE one for me. My family doesn't "believe in" Eating Disorders, and always said I was just being stupid because I was an "Attention whore". I had heard from others that people who actually have eating disorders have to go to a program to get better, or they never really had one. This was a HUGE stopper in my recovery. I wouldn't ALLOW myself to get better. Especially when I wanted recovery the MOST- I would purposefully go deeper into ed, so maybe I would just get SO sick they'd HAVE TO admit me. Then I would be able to recover.
..REALITY CHECK, anyone??

Also, my psychiatrist had made a deal with my old doctor- if my weight fell below __, I would be re-admitted to the hospital. After about two months of staying a few lbs over the line, my doctor says "Well it looks like you're pretty much recovered, there's really no need to see me anymore. Let's meet again in six months to a year to make sure you're still doing well."
Uhm, NO. Two months of barely staying above inpatient does NOT equal recovery. So many doctors are just so clueless about it, it's ridiculous.

[GML]

weight gain/you get your period back = recovery (I was mentally my worst when my weight was in the normal range)

if you're not "purely anorexic" or "purely bulimic" or "purely a binge eater" then you don't have an eating disorder.

you don't need to talk about food to recover from an eating disorder; you just need to talk about "underlying issues." sure, there are underlying issues, but, also, in the meantime, what do I eat?!

[Whitney C.]

Myth: Recovery is an uphill process (If you relapse, you're not in recovery)

This was detrimental to my recovery. It was when I learned that a relapse was a common part of recovery that I was able to forgive myself, rid myself of guilt, make healthy decisions, and actually STOP the relapses.

[runforjoy]

One of the myths I've recently learned to fight is "no one will believe you are hurting/struggling if you don't show it through behaviors/weight loss" I thought if I could show it with my body that I wasn't okay, then someone would get the message and help me. I didn't think anyone would believe me if I just told them how I felt. But I'm finding that people are actually incredibly willing to listen and much more able to help when I TELL them what I need and how I am feeling. I don't need to prove it through destructive behaviors.

[Carrie]

The most harmful myth I found (not mentioned above, that is) was that I had chosen my eating disorder. I didn't. It was an illness I didn't ask for and didn't want, but the ED distorts your mind. It's odd where one of the symptoms of an illness is the complete inability to understand that you are ill. This is further exacerbated by the fact that everyone was waiting for me to "choose" recovery when I didn't even see that I was sick!

Also that weight restoration means you're recovered and/or need less support. Maintaining weight is much harder for me than gaining, and I need just as much support than when I was really sick.

[Jay]

Myth: I chose to do this (false) therefore I can choose to stop (also false in the sense that it takes a lot more than "just deciding to stop").

[Jay]

Not sure if this is a myth per se, but it's definitely something I struggle with having family and friends understand:

Just because I'm terrified of letting go of this, doesn't mean I'm happy or satisfied with living this way. Just because I'm terrified of letting go, doesn't mean I'm not equally terrified of living the rest of my life like this.

[Jenni Schaefer]

Thanks again for this amazing feedback! Connecting with each other like this is powerful stuff.

[Rebecca]

"If you just eat, you will be better"

"I cant understand why anyone would not want to eat. You have to choose to want to eat and than you will be better"

"Good, you are a healthy weight, and your blood work looked good this week. You must be finally recovering"

"You must like having an eating disorder, or you would choose to not have it"

I have found all these statements very harmful for me to overcome my ED. I have chosen many times to give it up... I dont like having it, I just dont know how to get rid of it.

[Lori]

So many of these myths apply to me as well, namely that I have never been thin/sick enough to have an eating disorder, which led me to believe I was making the whole thing up. Even when I was throwing up every thing I ate, it was easy to discount this because that severity only lasted a few months (nevermind that I continued to throw up for years).

The myth I struggle with right now is that I can solve this on my own, that other people won't care or be interested, that if I share what I am struggling with with my friends, it will drive them away, so it's best to keep silent. I have slowly been opening up and been amazed by the caliber of my friends - accepting, encouraging, steadfast, speaking truth into my life. They have been the picture of God's love to me...which I have to admit makes me feel so stupid that I still struggle.

Which leads me to my next myth (I hope...) that I will always struggle, be stuck, because the "truth" is that no matter how badly I want to be better/healthy, I just don't want it bad enough.

[kayla_0031]

i think a major myth is that hospitilization and force feeding is the way to recovery.

I am a suffering an and at first with my family we attempted the maudsley method ( a vigorous eating plan in which i was supervised by members of my family each meal)as you can imagine this only made me want to be with ed even more. I didnt want to eat, i didnt want to be forced to do something, i wanted to be in control. My ed didn't go away. Thankfully for my loving family they gave me another option.

I now meet with a clinical/nutritional therapist and her method is to correct the brain chemistry before the body. Through her methods if discussing and recognising my behaviour i am truly now in recovery. I am still underweight but i accept and acknowledge my eating plan.

So to basically sum this up if you can get the brain to recognise and relabel your negative thoughts then trying to make the right decision when ed wants to control you is so much easier and clearer.

Recovery should be for the long term, not to quickly shove the food in you and send you home, that only calls for disaster and instant relapse.

A clear and healthy mind is a happy one :D

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