An Eating Disorder Outlier

I remember my statistics classes from high school and college.  I don’t really remember them with any fondness, but I do remember the good ‘ole bell curve.  I used to look at all of those dots clumped into the center of that bell curve.  All snug and close together, some right on top of each other.  They were the popular

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dots, I used to laugh.  The poor little dots at the beginning or the end of the curve were the outliers.  They were those dots that didn’t fit the norm.  They were scattered around at the ends and there generally were not very many of them. 

I have been an outlier at different points of my life.  Usually it was in the realm of medical stuff.  I had atypical gall bladder symptoms and it wasn’t removed for five years because no one could figure out what was wrong.  I had six c-sections when the norm was two or three at the most.  Being an outlier didn’t seem too bad at those times (well the gall bladder thing was a bit inconvenient).  It wasn’t until I had a child with an eating disorder that being an outlier really had some consequences attached to it.  Having an eating disorder in this day and age really doesn’t make one an outlier.  According to the National Eating Disorders Association 90-95% of eating disorders are adolescent or adult females.  The remaining 5-10% is teenage boys or men and the most common eating disorder among them is Bulemia.  Of males with eating disorders, it is reported that 42% of those males report they are gay or bisexual.  Among those with eating disorders, 30 – 50% (the statistics vary a bit with this one) has suffered some sort of trauma, most commonly sexual abuse.   All of these statistics are subject to the fact that eating disorders among males are thought to be under reported.

The road to an eating disorder diagnosis was long and arduous.  This was largely because we were outliers in every category.  Our son was male, he was straight, and he was never abused sexually, physically, or emotionally, and he had anorexia.  He was from a middle class home with two imperfect parents, to be sure, but parents who loved him and each other very much.  He had brothers and sisters who loved him and the usual brotherly/sisterly rivalries and shenanigans were present in our family.  It wasn’t perfect, but it wasn’t horribly dysfunctional either.  He wasn’t bullied; he made friends easily, and was very athletic.  He played high school baseball and loved hockey.

Being an outlier did have its consequences.  The first was that not even the medical doctors could be convinced that he had an eating disorder.  He was a “jock”, an “athlete”, but not an anorexic.  He was running 10 miles per day and his weight was down by 45 lbs and the doctor told him that he could run, just increase the calories a bit and take a vitamin.  Even when his heart rate fell into the 30’s and he was anemic, the doctor told us that intense athletes often have low heart rates and to take an iron supplement!  I was stunned.

The consequences of being an outlier were not just medical.  He was male.  Males were not supposed to have eating disorders, especially anorexia.  They were not supposed to be overly concerned with counting calories and vanity.  They were not supposed to be concerned with their body image or have a distorted body image.  Males didn’t think that they were too fat.  Males worried about building muscle, gaining weight, and being strong.  Males didn’t worry about what people thought of their bodies.  Girls worried about those things, right?  It’s the “girls” who were supposed to be the ones worrying about those things and those were the things that quantified eating disorders in most people’s minds.  The truth was that our son’s concerns regarding his body and how he came to have an eating disorder were different.  The result was that out son was ignored, he was invisible.  Nobody talked about him………he just ceased to exist.  He was marginalized, stared at, talked about, whispered about, but rarely talked to.  He created fear and discomfort.

While some of the common symptoms associated with female eating disorders are also shared by males; many are not.  The stereotypes listed above are not unique to everyone. Males are often more concerned with how their chest and abs look. They are often more concerned about their muscle mass.  Their attention is often focused on low body fat and building muscle.  They often strive for more muscle, but also for lean body mass. There tends to be less concern about calories than women.  Many male eating disorders revolve around sports and excessive exercise.  Many times dieting and being “health conscious” starts the cycle of the eating disorder.  Sometimes the demands of a particular sport begin the cycle.  Exercise becomes the focus and is often addicting.  A name for this has been coined Anorexia Athleticism.

My son would certainly fit into the above referenced category.  His eating disorder started with excessive exercise and a desire to improve his muscle mass and his athletic performance.  It was also a quest for the best workouts and the latest research on what was considered best.  There was also a sense of competition about it.  He would take great pride in the fact that he was doing exercise in weather and conditions that no one else would.  He also took great pride in never missing a day and felt weak and ashamed if he did.  There was a kind of exercise “elitism” which quickly got out of control.

Watching our son, the outlier, was very difficult.  He continually searched the internet to find someone that was like him and, at that time, there was not much out there.  He felt different, he felt out of control, and he felt like a man with a “girls” disease and therefore he felt he was weak.  I watched as his self-esteem plummeted, his health failed, and his isolation increased.  There was seemingly no help available.  He searched for support groups.  Women had very organized support groups both for eating disorder sufferers and for their families.  The LGBT community had addressed the issue as well and did an effective job at putting together support groups to address their specific issues. But our son was still an outlier.  There was no support group anywhere around us that would address his specific situation.  It was as if he was an alien, and he felt like one.

He was eventually hospitalized.  On the IP unit he received very good treatment and we were very pleased.  That said, it was mostly women and the groups were focused on the issues of the women.  It was difficult to feel connected to groups that talked about stopping your menses, breast shrinkage, fear of pregnancy weight, problems with boyfriends, etc.  I would listen sympathetically as he would tell me how uncomfortable he felt.  He had difficulty participating in these groups because he worried that any supportive comments he might make could be perceived as an attempt to “hit on” the girls in the group.  He was often the only male in the groups and felt very awkward.  Activities were centered around journaling about your feelings, crafts, and expression through artwork.  These are all very good methods of self expression and often very therapeutic for both sexes, but they are activities that women tend to use for expression more so than men.  This definitely heightened his sense of alienation.  We were very fortunate to have found an excellent therapist and treatment team after discharge which has been our lifeline in many ways.

It is hard to be an outlier.  There is something comforting about being snuggled in with all those dots in the center of that bell curve, especially if that curve represents something undesirable.   Misery needs company and we outliers would love to come inside.  Can anyone relate?

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