Discrimination and EDNOS: One Woman’s Story

TRIGGER WARNING: This post contains information that may be triggering to some readers who have struggled with or are struggling with eating disorder recovery. 

By Kath at Fat Heffalump

© Jakub Cejpek | Dreamstime.com
© Jakub Cejpek | Dreamstime.com

My name is Kath and I suffer from an eating disorder.

Officially, I have what is known as an Eating Disorder Not Otherwise Diagnosed (EDNOS). This means that I do not have Anorexia or Bulimia, but another set of behaviors that do not have a name. An unspecified eating disorder if you please.

I am mostly in recovery at this point in my life, but I still have issues with food, and behaviors and thoughts regarding my body.

I have an eating disorder and I am fat. Very fat. I am what in medical terms is known as “morbidly obese.” I personally prefer the term Super Fat. It means I get to wear underpants on the outside.

I wasn’t fat until I was about 11 or 12, and then it happened very quickly with puberty. However, my parents had told me that I was fat for as long as I could remember.

On learning that I am fat, most people assume that my eating disorder is binge eating or overeating because I must have been gorging myself to get this way.

Until a few years ago, every single doctor or medical professional I went to diagnosed me with overeating, often without ever asking me what I eat, or if they did and I told them, they didn’t believe me. They said I must be cheating, or lying, or not counting some things that I ate. I simply had to be an overeater to have “let myself get that fat.”

However, my disordered behavior was all about starvation. Restriction. Purging. Punishing. I started when I was about 13 or 14. Some bullies (girls) forced me to stick my fingers down my throat and make myself vomit because, “That’s what fat ugly bitches like you should do.” A year or so before this incident I had actually been shown what to do by another slightly older girl. I worked with her at an after-school job, and she thought she was being kind to the fat kid. She did it and it kept her slim, so she showed me how to stick my fingers down my throat and how to disguise that I was doing it. But it really wasn’t until the bullies forced me and humiliated me that I attempted to actually do it regularly myself.

I got very good at it. Nobody knew. I could vomit almost soundlessly. I could find reasons to disappear to the far corners of our yard to vomit behind trees. I started stealing laxatives from the medicine cabinet. I would take lots of Sudafed (a sinus decongestant that used to contain pseudoephedrine) because it made me manic and I could go through bursts of exercise. I learnt to “chew and spit” when I was eating in company. Sometimes I would stop for a while, particularly if I had spent time away from home and school where the pressure was always on.

However, I stayed fat. In fact, I got fatter.

The behavior continued after I left school. I became an obsessive vegetarian for several years as another way to exert control over my eating. I moved out of home at an early age and the independence afforded me a whole new range of opportunities for restriction, purging, and exercise binges. I lost some considerable weight at 18, only to have it come back with a vengeance some later, despite continuing my eating disorder. In hindsight, the weight loss was an indicator of severe illness.

I struggled with depression and anxiety all this time. I went to doctor after doctor, with both physical and emotional issues, but was repeatedly put on diets, usually without the doctor doing nothing more than looking at me and deciding I was too fat. If they did ask me to keep food/exercise diaries I would usually lie on them and say I was eating more and exercising less than I usually did. Even then, they didn’t believe me. If I told the truth they didn’t believe me either.

Remember, I was fat. I *must* have been overeating.

For 20 years, I kept presenting doctors with the same physical issues: An irregular menstrual cycle that manifested itself as constant bleeding, amenorrhea (absence of menstrual cycle), or dysmenorrhea (pain during menstrual cycle). In my early 30s, I was diagnosed with Polycystic Ovary Syndrome (PCOS); I discovered I had been showing symptoms and characteristics of it since I was 12. I was told yet again that the way to “cure” PCOS is to lose weight.

By the time I was 33, I was physically and emotionally exhausted. I had been put on Duramine, an amphetamine-based appetite suppressant, which made me cycle between mania and depression, and stopped me from sleeping or consuming anything, including water for days at a time. I was exercising between six and eight hours per day. I had lost over 50lbs (about 25kg) and dropped five dress sizes. I was desperately unhappy and my physical health was failing. I was not coping at work and it was suggested that I should see the counseling service through the employee assistance program. I saw a few different psychologists—they all focused on my weight. Eventually, out of desperation I begged one of them to help me, told him of my suicidal thoughts and explained my obsession with diet and exercising. His response was to suggest that I add another half hour to the six to eight hours I told him I was already doing, “To get you over the plateau.”

That night, I attempted suicide, only to be halted by a dear friend contacting me because he was worried.

On the recommendation of another friend, I went back to a doctor I had liked (even though she had previously suggested weight loss), and told her how I was feeling. Thankfully, she listened and recognized I needed further help. She helped me get the medical support I needed, both physically and mentally. She referred me to a psychologist whom I clicked with almost immediately. Through cognitive behavioral therapy, I began to work on my self-esteem and self-worth. In 2008, I decided I was not going to diet anymore. Soon after I found the Fat Acceptance movement, and discovered that I could be healthy, and that I know my own body if I only take the time to listen to it.

My GP, psychologist, and I work together on my physical and mental health. They both accept that I know my own body better than anyone else, and trust that I will tell them if I feel something is not right. I trust them to guide me through any medical issues that arise with the best professional advice. I have an agreement with them that they will not focus on my weight, but instead on my health, and I have introduced them to a Health at Every Size method.

It is important to me to talk about having an eating disorder as a fat person. Where thin or normal weight patients often get sympathy and understanding, and even simple recognition of their disorders, fat patients are ignored, considered lying or “cheating” somehow. So often disordered behavior is sanctioned in fat people simply because there is a belief that fat people must have got that way through inactivity and gluttony.

How many people have to suffer, or even die, because of the belief that no matter what the cost, thinner is always healthier?

Editor’s note: Under the recently released DSM-V (2013) EDNOS is now categorized as OSFED (Other Specified Feeding and Eating Disorder). See the National Eating Disorders Association for additional information

Related content:

EDNOS: The Eating Disorder You Haven’t Heard Of

Expressing Disorder: Art Therapies for Eating Disorder Treatment

Celebrating Eating Disorder Recovery: Inaugural NEDA Walk in Texas

Study: Black Girls 50% More Likely to be Bulimic than Whites

Multicultural Women & Body Image

You Don’t Have to Have an Eating Disorder to be Image Obsessed

31 thoughts on “Discrimination and EDNOS: One Woman’s Story

  1. Thank you again for sharing this. I feel so very much for your struggles and it is just a sobering reminder for everyone to stop and think before we place judgement on others. The adage, don’t judge a book by it’s cover, becomes so much more complex when we grow past elementary school and into the world of self-hate, shame, and into the deeper corners of the mind. It hurts me deeply that medical “professionals,” and I use that term lightly, are seemingly so unversed in this simple notion, taught to us in kindergarten.

    I myself have had a clinical eating disorder for over 10 years and have always been disordered about eating since childhood. It is only in the past 2 years that I can say I am recovering from what has been literally every manifestation of an eating disorder from compulsive overeating to anorexia and bulimia. My body weight has also been all over the scale. I truly believe that I would not have had to suffer for 10 plus years and have my body wrecked by the physical complications of these terrible disorders and the best years of my life dimmed with the anguish of self hate and doubt if I had not started off as obese. Because my disorder began when I was obese and then brought me to the higher end of normal where I stayed for many years due to medication that I was on for an autoimmune condition, my doctors condoned my anorexia which soon lead to extreme bulimia. It was not until years and years later when I was clinically underweight that anyone raised an eyebrow and THIS IS WRONG!

    One of the main triggers that lead me down this whole road (including the COE) was doctors, due to my auto-immune condition and constant poking, prodding, and testing. When steroid medication made me gain weight at the onset of puberty along with the comfort eating, I got some of the most hurtful comments from doctors that a young person in my emotional state was not capable of properly assimilating along with the bullying I encountered from my peers. Doctors need to pass these mattes along to specialists/ therapists if they do not know enough about a) nutrition b) eating disorders c) psychology etc. because they are in a position of influence and what they say can be so damaging.

    I sincerely appreciate your sharing and I hope that more people like yourself can open up and help enlighten others, help sufferers feel less alone, and perhaps maybe reach professionals out there who are ignorant about all of the facets of eating disorders.

  2. Thank you to all of you above. I have been “morbidly obese” most of my life. I am 56 years old. I have watched my 27year old daughter come way to close to death with anorexia and bulimia. I am sick to death of all the “skinny is the only beautiful” talk and I speak out at every opportunity. I eat healthier than most of the people around me. I am active, have many friends and am involved in life. I feel good although I do suffer with joint pain due I am certain to being overweight. I just refuse to buy into the crap that skinny is healthy and fat is unhealthy. It’s perverted and in my opinion comes from the pit of hell. Over the last 25 years I have come to love who I am, realize my potentials and am free to be me. That sounds silly but when I see what people do and and obsess over for the sake of appearance I literally want to purge. Thanks for letting me vent. My pat on the back to you, Kath because you are gona make it and love you which is a huge gift. God made you the way you are – embrace the gift!

  3. i felt like i was at my wits’ end today and i googled eating disorder and somehow found this page. i have not had my period for almost an entire year… i’ve purged so many times this year and have tried so hard to exercise and gone ‘vegetarian’ this year but failed. anyway when i was reading your story i started to cry because it was so real and true to me. it’s fucking tough… i used to have a mild anorexia thing going but after a bad breakup i turned to food and then i gained a bunch of weight. argh… just.. fuck

  4. Your courageous sharing of being forced to make yourself vomit by your fears makes me so sad. It is incredible to me how cruel teens (or people in general) can be to each other. Horrible.

    BUT the fact that you’re able to talk about this is, I think, I sign that you are taking steps toward health — both mental and physical health. YAY! I’m cheering you on. 🙂

  5. Thank you again for all of your kind words and support and for sharing your own stories too.

    Only by continually speaking up about our experiences can we break down the walls that keep us from getting help, from being heard by those who are supposed to be on our team.

    And to Skip and anyone else who thinks they are unloveable as super fats – this is utter rubbish. Even the most reprehensible human being has someone that loves them. If there is someone to love those people, there are plenty of people to love those who are in fat bodies.

  6. Tank you for writing this… except for the bulimic aspects (I never got the knack!) I could have written almost every word of this. Two years ago after having lost 50 pounds through utter starvation and yes, still “morbidly obese”, I went to a new doctor after having avoided them for years. I was dizzy all the time and borderline anemic from starving and suffering from PCOS, as I had been for years, and chronic migraines so bad I spent much of the time locked in the house with the shades drawn. Rather than try to help me with any of my problems, he ordered a full bloodwork panel, looked over all the excellent bloodwork to find one extremely borderline cholesterol finding (all but one number were perfect) and point to that as a reason to tell me to “diet and exercise more”. No high lipids, no high overall numbers, no bad ratio, no high blood sugar, no high blood pressure, and borderline anemic iron count. Clearly what I needed was to eat less! I’d been eating an average of 800-1000 calories a day for a year – slowly killing me, but I still wasn’t thin. I kept it up for another year, still didn’t get thin, although I got thin-ner, and sicker – on top of other things I have a shin splint now that just won’t heal, when I always used to have strong bones – and after a few months of somewhat shaky “recovery”, eating what for anyone else would be an incredibly healthy diet and probably a weight loss diet, I’m actually GAINING weight and feel miserable about myself. I”m trying to hang on to some kind of sanity. I haven’t weighed under 200 pounds (at 5’5″) for over 12 years no matter what I’ve done. I can climb a mountain but I can’t get my weight to “non-obese”.

    Two years of dangerous levels of starvation, hair falling out, bones going brittle, anemia, heart racing and everything else, and people still look at me like I stuff my face at McDonald’s every other day. In the meantime I feel guilty for eating a bagel with LOWFAT cream cheese instead of fat free cream cheese for breakfast. When does this end?

  7. Hi Kath. I’m a super fat man who is Ok with my body style because I feel good, lead an active life, have a lot of friends and really don’t care what anyone thinks about my appearance anymore; not even the doctors who think the same as what you were told. I had lost half my body weight twice in my life, only to gain it all back, plus, both times, and although I looked physically good I didn’t feel good physically, mentally or emotionally. I got physically sick more often then when I have the weight on. I am again super fat and Ok with it. Yes…there are some drawbacks like I would love to be married, but women are not attracted to me and won’t even take the time to get to know me, well I say, their loss. That said I can honestly say that I’m happy being single and super fat. Your right, we all know our bodies and even though I’m super fat I feel great. At 56 and super fat I feel better then at any time in my life and I hope you do to and will continue to feel good about yourself. Keep up the good work, feel good about yourself because we are all beautiful people under the surface, even if the surface is thick. Thanks for the great post. Let’s spread the word that super fat is beautiful, because it doesn’t matter what size a person is on the outside. What matters is what size the person is on the inside and for those who look down their nose at us just because we’re different…well…I say, their loss!

  8. Kath, this was heartbreaking to read. I’m going to link to this post in my own blog; you’ve practically set out a checklist of the things that are wrong with a fat-phobic world where doctor’s cant even look past your weight to see you starving. Thank you for being brave enough to post this.

  9. Thank you, thank you, thank you for telling what is also my story. It is so healing for me to hear it from someone else. Makes me feel a little less crazy. Stay strong.

  10. Kath, thank you for sharing your story, because it is definitely an important one which needs to be heard, not least by health care professionals like the ones who failed you. I will do my part to spread it around.

  11. @Sandy – I do just want to clarify that there were times that I didn’t just keep going. There were huge chunks of time (years in fact) that I stayed home, sick and depressed and hating myself because nobody would listen. Those were the times that were the darkest, and the times I abused my body the worst in the name of getting thin.

    I actually believe it’s simply luck that I found help. Luck that I went to a particular doctor at a particular time. That and the support of good friends.

  12. Kath,
    Wow. The way you were treated by the girl bullies; by some counselors and physicians is disturbing. What’s more personally disturbing – and this is about me – is that, although not an “AdiosBarbie”, I write some posts on body image and yet, deep within me, I have some of the same beliefs about weight that you talked about in your wonderful, painful and amazing story. For example, being Super Fat, means a person is overeating. It is so hard to purge that belief. I was raised on it. (I’m 61 yrs. old) The detail of your story helps me to chip away at that misguided assumption. A very close friend is super fat and he has helped with it too.

    Again, thanks for your honesty and allowing yourself to be vulnerable by sharing here. Cherry

  13. Thank you all for your support and encouragement. It was a huge leap of trust to talk about this in an environment that I don’t control but I knew Adios Barbie would be the supportive environment to do that.

    It is important to me to talk about my experiences because so much shame and stigma has been placed on fatness and eating disorders. It is because of people who talked about their experiences that I have been able to work towards healing, and I really just want to give something back for that.

    Not to mention that so often, fat people are pushed aside, ignored and accused of lying when it comes to eating disorders and their health. Someone needs to speak up about that.

  14. I so admire that you kept on going to find the people who could support you, and you didn’t just start to doubt yourself like so many people do in the face of that disdain from the medicos. Very inspiring, thanks for sharing.

  15. Thanks for writing your story Kath – a very powerful piece. Truly amazing that professional people supposedly ‘in the know’ are so dangerously judgemental. I wish you all the good things – including acceptance for being a lovely person

  16. Oh Kath, this is so heartbreaking. It is so horrifying and wrong that so many fat people with eating disorders – and my own experience is similar to yours in several ways – are dismissed and ignored like this, to the point where suicide seems like the only way to make it stop. I’m so glad that you survived and are surviving, and that you finally got access to real help, because you are an amazing person and a real beacon of hope and strength in the Australian fat-o-sphere.

    In the preface to my Honours thesis, I talked a little bit about my history with eating disorders, and alluded somewhat timidly to the fact that if I hadn’t been fat to start with, I would have been diagnosed with anorexia in a flash. When I asked some friends to proof read it for me, a friend told me that my decision to refer to anorexia at all was inflammatory and I didn’t fit the diagnostic criteria. I felt like she was dismissing both my eating disorder and the whole point of the preface; that if you are fat, incredibly dangerous and obvious problems with food and your body just are not taken seriously.

    Thank you for sharing your story, it is a really important issue that needs to be addressed.

  17. I think I’ve commented on your blog, but I’m here again, just cant seem to stay away 😀
    I have done pretty much everything you’ve described including the damn sudafed. How wicked is that stuff? I could stay up for days, manically exercise and I wouldn’t want to eat a thing. I didn’t however lose incredible amounts of weight, I got down to about 70kg and that was it. 70kg! Positively thin when looked alongside my current 97kg. But I digress, I’m not aiming for 70 now and I don’t care that I am 97. HAES, FAS and blogs like yours have made me see I have nothing to be ashamed of. I still have vague, crazy thoughts about food, especially when my hormones are going into overdrive.I still fight not to see food as the enemy because I love to cook and eat and I have children who do need to know food is not evil, it is to be enjoyed. I have PCOS as well, and my gynaecologist is like some of your former Docs who insists I must be stuffing my face despite my food diary and my exercise. She was convinced I had diabetes or pre-diabetes even though I present no symptoms. My blood tests were positively angelic in their pureness. I had excellent cholesterol, excellent blood sugars and no other blood indications I wasn’t one of the healthiest fatties ever! Boo to her.
    I thank you for being a face who stands up and pushes aside the worn out stereotypes. It’s a long hard road but people like you make the journey so much better, Thank You.

  18. Thank you for sharing your story. It is so important that we talk about this. I’m so glad you’re a survivor. Reading your blog has definitely helped me.

  19. This is so awful. I’m so glad that you’re getting help now. It’s so difficult to know that you aren’t lying or cheating and to be told that you are. I’m not obese, just overweight. I’ve been called obese more time than I care to remember. I’ve exercised four or more hours a day. I haven’t been to the places that you have and I’m thankful. My heart goes out to you.

  20. This is such a powerful story!!!! I feel this is a HUGE problem I try to address as an ED advocate. We dont 1) fit in boxes and 2) you cannot determine the health of a person by weight alone. This is why I strongly support the HAES and FA movement, because within all of this, these are real people, with real stories, and the media and hype of this so called “obesity” crisis is a lot of hogwash. People just do not read the research. We need to truly break down the walls of eating disorders, disordered eating, and let peoples voices be heard. Thank you for sharing

Leave a Reply

Your email address will not be published.