Life with Ed, Part 4: Back to Basics

First things first: go follow me on Twitter. Now back to your regularly scheduled sarcasm.

The past three posts have received an overwhelming response, and I am so incredibly grateful. It means so much to me that my story is touching so many people and increasing understanding of eating disorders, so THANK YOU for reading! Today, I want to get back to basics a little bit and talk to you about eating disorders in general – the signs, symptoms, contributing causes, and some statistics  – because so many people just think of super skinny women when they think of the “face” of eating disorders, and that is not the entire reality.

The Harsh Reality

Eating disorders have the highest mortality rate of any mental illness. Higher than depression, schizophrenia, post-traumatic stress disorder. A study by the National Association of Anorexia Nervosa and Associated Disorders reported that 5 – 10% of anorexics die within 10 years after contracting the disease and 18-20% of anorexics will be dead after 20 years, and 20% of people suffering from anorexia will die prematurely from complications related to their eating disorder, including suicide and heart problems. Similarly elevated rates are found among those suffering from bulimia.

Twenty percent of us. One in five.

People suffering from bulimia are more likely to commit suicide than any of the other disorders.

As you might expect, the average age of onset is in the adolescent years, particularly during the early teenage years. However, eating disorders are being recognized in patients during childhood – we’re talking 9 year olds here. It’s incredibly important to recognize warning signs early, because the earlier treatment begins, the greater the chances are for recovery.

My parents hate my tattoos, but I like this one.
My parents hate my tattoos, but I like this one.

Anorexia Nervosa

The clinical name for anorexia is Anorexia Nervosa, which is probably the eating disorder people are the most familiar with because it is the most physically noticeable, with sufferers generally becoming very thin. Warning signs of anorexia include:

  • Dramatic weight loss.
  • Preoccupation with weight, food, calories, fat grams, and dieting.
  • Refusal to eat certain foods, progressing to restrictions against whole categories of food (e.g. no carbohydrates, etc.).
  • Frequent comments about feeling “fat” or overweight despite weight loss.
  • Anxiety about gaining weight or being “fat.”
  • Read the whole list of warning signs here.

The official diagnosis of anorexia comes with the following symptoms:

  • Resistance to maintaining body weight at or above a minimally normal weight for age and height.
  • Intense fear of weight gain or being “fat,” even though underweight.
  • Disturbance in the experience of body weight or shape, undue influence of weight or shape on self-evaluation, or denial of the seriousness of low body weight.
  • Loss of menstrual periods in girls and women post-puberty.

We’ve already gone over some of the health consequences of anorexia, which can ultimately result in heart attack or death.  I’m trying not to be too excessive with the bullet lists, since we’ve got a long way to go. About 90-95% of anorexia sufferers are women, which means that a lot more men than you’d think suffer from the disease. It is estimated that about 1 in 200 American women suffers from anorexia. While the numbers of male sufferers are smaller, this is the group least likely to receive treatment because anorexia is thought of as being a “female” disease.

This article does the best job I've seen describing the way anorexics see themselves.
This article does the best job I’ve seen describing the way anorexics see themselves.

Bulimia Nervosa

Bulimia Nervosa, the medical name for bulimia, is characterized by the National Eating Disorder Association as a “serious, potentially life-threatening eating disorder characterized by a cycle of binging and compensatory behaviors such as self-induced vomiting designed to undo or compensate for the effects of binge eating.” Warning signs of bulimia are more numerous than anorexia, but often go unnoticed:

  • Evidence of binge eating, including disappearance of large amounts of food in short periods of time or finding wrappers and containers indicating the consumption of large amounts of food.
  • Evidence of purging behaviors, including frequent trips to the bathroom after meals, signs and/or smells of vomiting, presence of wrappers or packages of laxatives or diuretics.
  • Excessive, rigid exercise regimen–despite weather, fatigue, illness, or injury, the compulsive need to “burn off” calories taken in.
  • Unusual swelling of the cheeks or jaw area.
  • Calluses on the back of the hands and knuckles from self-induced vomiting.
  • Discoloration or staining of the teeth.
  • Creation of lifestyle schedules or rituals to make time for binge-and-purge sessions.

The vast majority of bulimia sufferers appear to be of average body weight or are slightly overweight, which is part of why the disease is so easy to hide. People expect eating disorder patients to be extremely skinny, but this is actually only a hallmark of anorexia. The symptoms of bulimia that ultimately lead to diagnosis are:

  • Regular intake of large amounts of food accompanied by a sense of loss of control over eating behavior.
  • Regular use of inappropriate compensatory behaviors such as self-induced vomiting, laxative or diuretic abuse, fasting, and/or obsessive or compulsive exercise.
  • Extreme concern with body weight and shape.

Again, we’ve already discussed some of the health consequences of bulimia, but one of the most serious is electrolyte imbalances that can lead to irregular heartbeats, heart failure, and death. Bulimia is more common than anorexia, with about 2% of American women suffering, and many bulimia sufferers are aware of the health consequences of the disorder and choose to ignore it.

Terri Schiavo, before and after. You may remember her from her "right to live/die" case, but Terri Schiavo had a heart attack caused by an electrolyte imbalance as a result of bulimia. The lack of oxygen to her brain left her brain dead.
Terri Schiavo, before and after. You may remember her from her “right to live/die” case, but Terri Schiavo had a heart attack caused by an electrolyte imbalance as a result of bulimia. The lack of oxygen to her brain left her brain dead.

Unlike anorexia, only 80% of bulimia sufferers are female. While I obviously can’t speak to the suffering of men with bulimia, something my ex-husband said to me once sticks with me. When I tried to explain to him how serious my eating disorder was at the time and why I needed more in depth therapy at the time, his response was “I don’t really see what the big deal is. All wrestlers throw up all the time during wrestling season to make weight and you don’t see us in therapy.” Aside from the fact that he’s obviously an asshole, it got me thinking. How many wrestlers, jockeys, boxers, MMA fighters, whoever, are ending up with eating disorders? That’s definitely not your average skinny girl.

Binge Eating Disorder

Binge eating disorder is the most recently added to the list of clinically recognized eating disorders (as of May 2013), and it is the one that affects the largest number of people. Up to 5% of Americans are said to suffer from binge eating disorder, which is characterized by recurrent binge eating without the regular use of compensatory measures to counter the binge eating. The symptoms of binge eating disorder include:

  • Frequent episodes of eating large quantities of food in short periods of time.
  • Feeling out of control over eating behavior during the episode.
  • Feeling depressed, guilty, or disgusted by the behavior.
  • There are also several behavioral indicators of BED including eating when not hungry, eating alone because of embarrassment over quantities consumed, eating until uncomfortably full.

The health consequences of Binge Eating Disorder basically mirror those of clinical obesity, including high cholesterol, high blood pressure,  heart disease, diabetes, etc. That being said, not all people with Binge Eating Disoder are overweight. While I don’t have any experience with Binge Eating Disorder, the woman who inspired me to write my “Life with Ed” series does. Her name is Emily, and she suffered from binge eating disorder for 13 years. Her “Life of a Binge Eater” series does a fantastic job of describing what it’s like to deal with binge eating disorder, so check it out. I think it’s fascinating! You can even see that I pretty much stole her disclaimer because I thought it was perfect.

A typical day of food for Emily during the height of her disorder
A typical day of food for Emily during the height of her disorder

Of all of the eating disorders, I think that Binge Eating Disorder probably gets the worst rep and has the biggest misconceptions surrounding it. I mean, how many of you read those symptoms and your first thought was “yeah right, that’s just all fat people?” The reality is that the same compulsion that causes me to lose control of my tendency to restrict, purge, etc is the one that causes some people to binge eat in massive quantities. In the same way that not all thin people have an eating disorder, not all overweight people have an eating disorder.

Eating Disorder Not Otherwise Specified (ED-NOS)

Ah, my Ed. ED-NOS is basically a diagnosis given to people who exhibit a combination of the behaviors associated with anorexia and bulimia. Each case looks different, but the health consequences are just as serious and will reflect the specific symptoms of each individual.

This isn’t really relevant to the “back to basics” concept of this post, but it’s my blog, so screw it. I will never forget receiving my diagnosis of ED-NOS, but not for the reasons you might think. I remember it because I felt a combination of sad and incredibly angry when they told me. I felt like a failure because I didn’t fit into a “real” category.  I wasn’t anorexic and I wasn’t bulimic; I was some fake disorder called ED-NOS that they just gave to people who weren’t really sick. That’s honestly how it felt. It felt like I wasn’t good enough to have a “real” eating disorder. As I’ve touched on in previous posts, there’s a sense of pride and competition within the ED community. We all want to be the “best” or the “strongest” or “the one with the most will power.” You don’t even have to have ever spoken to another patient to feel that way. Maybe it’s built into our (stereotyping here) Type-A personalities to feel that way. Anyway, that has nothing to do with anything, just thought I’d give you some further insight into my twisted mind.

The Takeaway

We don’t all look the same, but we’re all just as sick. Early detection and treatment is the best chance anyone has for recovery, just like every other disease, so know what to look for! In an upcoming post, I’ll talk about what to say (and just as importantly, what not to say) to someone who is suffering.

COMMENT: I’ll be doing a question and answer blog to wrap everything up at the end of the series (which is still several posts away). Ask me anything eating disorder related – it can be about me or just general knowledge or whatever you want – and I’ll do my best to answer it. Leave a comment with your question or email it to thetrexrunner@gmail.com and I’ll add it to the list!

18 thoughts on “Life with Ed, Part 4: Back to Basics

  1. I am so inspired by you!! I have 2 questions if that is alright:
    1) I am currently a Physician Assistant student and I am sure I will have people with eating disorders as my patients, what do you think is the best approach to help them?
    2) What exactly are they doing when they operate on your stomach? Will this help youe eating disorder?
    Best of luck!!!
    -Jenny

  2. Really good information. Thank you. I appreciated your point that not all people with eating disorders are super-skinny women and not all EDs are anorexia. A friend of mine worked as a counselor in the health center of a university. She said that eating disorders among males (especially male athletes) was a growing concern, and that she was seeing an increase in male patients.

    1. It’s easy to get caught in the trap of thinking that there’s just one certain type of person that has an eating disorder. One of the things that opened my eyes the most has actually been this series of posts. So many people that I would consider fairly close friends told me they had absolutely no idea, and I think I’m a pretty stereotypical patient. I can’t even imagine how much harder it must be to recognize it in others, especially men.

  3. Thanks again for sharing – and for expanding the palette, as it were. In my previous comment on #3 I mentioned some of my own issues and my knowledge that I will deal with food ‘relationship issues’ for the rest of my life. I am very fortunate I have a wonderful wife of almost 21 years to keep me honest and very observent kids who will call me out on my BS. I have never really binge eaten, but I don’t think calling my take on Runner’s Worlds’ ‘Running Streak’ *obsessive* would be out of whack (the challenge was >1 mile per day from Thanksgiving to New Years … I did an average of 7.5 miles per day from early Nov. to mid-Jan, 65 days and 500 miles)

    As you say, men too often get ignored in the whole eating disorder thing.

    My son joined the high school wrestling team last year, and the need to ‘make weight’ is extreme. He dropped some weight due to the hard workouts, but he was riding a few pounds above the desired weight class, and there was definite pressure to get those pounds down before the season started for real … and keep them down while also having hard daily workouts and … y’know being a kid who is growing and needs food.

    Again … thanks so much for sharing and for this really cool blog.

    1. I think the thing that makes me the most sad is that men not only have to deal with being ignored in the whole eating disorder thing, but I would assume there could also be a good bit of backlash from dealing with something that’s considered a “girl” problem. Pressuring growing kids to weigh a certain amount is going to have consequences no matter what gender they are. I really appreciate your perspective on this whole thing. Even as someone who has an eating disorder, I still can’t see it from the male perspective, so this is super valuable to me!

  4. So glad you touched on Binge Eating as a disorder too. I have a combination of that and the food addiction (if you remember reading my blog about that). It’s so shameful, I have done anything for food in the past. I stole change to buy ice cream at the shop that doesn’t accept credit cards after purposefully not carrying cash so I wouldn’t get ice cream. Sometimes compulsion makes us do things we know are wrong. Definitely not proud.

  5. I love reading your blog. It has been hard for me to read lately due to the fact that I too had an eating disorder. I meet all the requirements of anorexia. My parents did nothing about it. The inner pain I felt back then comes back when I read about what you have been through. My son was on a wrestling team for 2 years. They taught him “how to make lower weight class”. Even years later, he is still suffering from feeling that he is not skinny enough. I follow him carefully. We got rid of the scale. I make sure he eats. We try to make he feels confident and has positive experiences to build him up. It is not easy. I feel his pain. Mentally it is still hard for me. Thank you for educating others. Hopefully, someone will read your information and be able to find help for themselves or for someone who needs it.

  6. It’s common to dismiss the mortality statistics – I certainly did when I was anorexic. But over time, those statistics took on a meaning that was all too real – I lost several friends to eating disorders. In fact, the eating disorder therapy group that I was in my senior year in college has just 2 survivors – we recently connected on Facebook. Coincidentally (or maybe not) we are both runners.

    Life is precious, and it’s good to see you embracing it in your blog. Run on!

    1. It really is easy to think “it won’t happen to me,” even as you watch people around you suffering. I am so glad you and your friend are doing better! Let’s go on an ED run sometime 🙂

  7. So glad to have found your blog, Danielle, though I wish it’d been before Myrtle Beach this year because I was there, too! I am an in-recovery ED-NOS (almost 20 years, woot, with a few slips and slides when things get tough) and you hit the nail on the head with your description. I felt like such a failure that I wasn’t even a “good enough” anorexic. A few years ago in grad school I answered an email for a study they were doing on women and body image and ED, and I was rejected…for not having been skinny enough. Trigger?! Heck yeah, should never have answered the call! But thanks for this series, I am reading all of them now and you are so forthright and this could be really, really helpful for people who are trying to understand what others are going through. (I always thought people should just “know” what I felt…slightly flawed logic 🙂

    1. I’m so glad you found my blog too, Maureen! I completely relate to how you feel and I can’t even imagine what a trigger that would have been. A shiver went down my spine when I read it! I will be finishing up the series soon hopefully. Please let me know if you think I missed anything!

  8. This might seem like a really stupid question.
    You talk about being competitive and strong in the world of people suffering from eating disorders but the way I’m reading it seems to be the wrong kind of competitive? Or am I wrong?
    So the stupid question is this – why not be truly strong and competitive in winning over the disorder? I apologize if it sounds like I’m giving advice on a subject I obviously know nothing about (I learned that reading your posts).
    I mean the ultimate win situation here is the one where you beat the ED.
    I haven’t yet read through but it looks like you are on a winning streak. 🙂

    1. Not a stupid question at all! It is something that is very hard to understand and it is definitely the “wrong kind” of competitive. I think it has to do with the typical personality type of someone with a severe eating disorder – many are competitive in nature, and when you’re in the grip of the illness, you want to be more sick than everyone else. How messed up is that? It has to do with the false idea that people with anorexia and bulimia have more “willpower” than everyone else. If you think that not eating or that throwing up your food is willpower, then recovery would indicate that you’re weak. It’s a really vicious cycle for sure!

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