Benign Neglect?

Recently I wrote a blog post titled, “I Am Not My Brother”.   In this post I described my daughter’s two year quest to find a diagnosis for her symptoms and how she was forced to live in the shadow of her brother’s eating disorder.  The post described the difficulties our family had getting a diagnosis of anorexia for her brother who very nearly died of the disease and how our daughter was virtually accused of being an anorexic by most of the doctors who examined her, and yet, she turned out to have an autoimmune disease, not an eating disorder.  In this post I wondered how far we have really come in recognizing that eating disorders are not the disease of teenage girls.

I recently received a phone call from a very old and dear friend that rekindled my suspicion and my disappointment that much education is still needed and the stereotype of the typical “eating disorder patient” is alive and well.

My phone rang one morning this winter and I had the pleasure of finding my friend on the other end.  We live far apart now and don’t talk nearly as often as I would like.  She was in distress that morning and told me that she had been feeling very ill for over two years and that neither her primary care physician nor any of the specialists she had seen could find the reason for her symptoms.  I was concerned and asked her to tell me about it.  She described periods of dizziness, a feeling of being off balance, and weakness.  The periods of dizziness were so frightening that she was becoming afraid to drive.  She described feeling as if she was perpetually “buzzed” or like she had had one too many drinks at a party.   She went on to describe seeing her primary care physician, a cardiologist, a neurologist, and several other doctors whose specialty I cannot recall, but the bottom line was that none of them could come up with an explanation for her symptoms.  In the course of our conversation my friend shared that the only abnormalities found were her BUN, her Creatinine, and she was slightly anemic. None of her physicians felt that these abnormalities in her lab work were significant enough to be the cause of her symptoms. I thought back to the last time we had seen each other. It was 3 year ago at a surprise party to celebrate her 50th birthday.  I remembered noting at that time how thin she was.  The particular labs that were found to be abnormal sent up a red flag in my mind.  I asked her if any doctor ever checked her blood pressure and pulse sitting and standing.  She answered that the cardiologist did and informed her that her blood pressure and pulse were low and noted that she was having orthostatic changes in both, but was not too concerned.  I was really concerned.   I gently asked her if anyone had broached the subject of how she was eating.  She indicated that she had not been asked this question, but shared with me that as a teenager she had anorexia, but “beat” it.  We talked for a long time and it came out that she was constantly scouring “organic” and holistic websites looking for better nutrition and felt at times obsessed with finding the “perfect” diet, supplements, and exercise regimens.  Orthorexia and anorexia both rang in my ears, but how would I tell my friend that I didn’t believe she had completely “beaten” her eating disorder.  We continued talking and to jump to the end of conversation, I suggested that she go back to her primary care physician and describe the history that she shared with me and ask for a referral to be evaluated by a physician specializing in eating disorders.  I am happy to say that she is now in therapy for her eating disorder and the cause of her dizziness and weakness is felt to be low blood pressure and anemia caused by malnutrition.  She is getting better.

So how could this have happened?  How could a woman present with dizziness, the abnormal labs, the orthostatic changes in blood pressure and pulse, the low body weight, and not one doctor ask about or suggest the possibility of an eating disorder?  How could a young man lose so much weight, exercise compulsively, have virtually the same abnormal labs, pulse, and blood pressure changes described above and be called a “jock”.  Why is a teenage girl who is experiencing weight loss, but no abnormalities in labs, pulse, or blood pressure, and who describes a very normal pattern of eating nearly accused of having anorexia and placed on the defensive?

I think that the answer lies in the stereotypes we create.  Those stereotypes color our perceptions and are very hard to shake loose.  Teenage girls get anorexia.  We educate doctors, teachers, coaches, and parents to be aware and watch our girls.  A thin, teenage girl would get the hairy eyeball and a concerned comment from a grocery store clerk, but a male and a middle aged woman can’t get the same concerns from their doctors!  Eating Disorders have become an epidemic in this country and they are not just striking teenage girls, but, like race horses wearing blinkers to obscure their peripheral vision, we tend to limit our own vision and miss the others who are also affected by this illness.

There is also much less of a culture of acceptance of males and older women as relates to eating disorders.  They create much more fear and disdain among friends and relatives because they fall outside of the realm of the expected and accepted and make us uncomfortable as now no one appears safe.  This can force those that fall outside of the expected group of eating disorder sufferers to go underground with their illness and not report it or talk about it.

Much more education is needed if we are to truly begin fighting back against this illness.  If we are missing a large segment of the population in our failure to recognize the symptoms of an eating disorder, we cannot know the scope of the problem and we cannot properly fight this enemy.  We cannot continue the cultus of “benign neglect”.  Eating disorders are not unique to our teenage girls and young ladies.  Males and older women not only have eating disorders, but their presentation can, and often is, different.  Much more education is needed to identify this often insidious illness in its early stages before it plants strong, hard to weed, roots.  A culture of listening with the intention to understand and not just to respond needs to be present as well and I wonder sometimes if that is becoming a lost art.

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