There’s a lot of misunderstanding and misinformation out there concerning eating disorders. Additionally, there is a lot of ignorance, insensitivity, and disrespect in the way people talk about eating disorders and devalue the seriousness of this mental illness. I may be hypersensitive to this issue given that I struggled with an eating disorder for many years and now work as an eating disorder counselor; however, I don’t think I am in the wrong for this. In fact, I think more people should be (and need to be) hypersensitive to this issue.
For starter, here are some basic statistics on eating disorders from The National Association of Anorexia Nervosa and Associated Disorders, which I think pretty adequately portrays the seriousness of this illness:
- At least 30 million people of all ages and genders suffer from an eating disorder in the U.S.
- Every 62 minutes at least one person dies as a direct result from an eating disorder.
- Eating disorders have the highest mortality rate of any mental illness.
- 13% of women over 50 engage in eating disorder behaviors.
- In a large national study of college students, 3.5% sexual minority women and 2.1% of sexual minority men reported having an eating disorder.
- 16% of transgender college students reported having an eating disorder.
- In a study following active duty military personnel over time, 5.5% of women and 4% of men had an eating disorder at the beginning of the study, and within just a few years of continued service, 3.3% more women and 2.6% more men developed an eating disorder.
- Eating disorders affect all races and ethnic groups.
- Genetics, environmental factors, and personality traits all combine to create risk for an eating disorder.
Furthermore, eating disorder research consistently receives less funding than any other mental illness while at the same time having the highest mortality rate. I think the table below (from NEDA) adequately illustrates the craziness of all this:
Illness Prevalence NIH Research Funds (2011)
Alzheimer’s Disease 5.1 million $450,000,000
Autism 3.6 million $160,000,000
Schizophrenia 3.4 million $276,000,000
Eating disorders 30 million $28,000,000
“Research dollars spent on Alzheimer’s Disease averaged $88 per affected individual in 2011. For Schizophrenia the amount was $81. For Autism $44. For eating disorders, the average amount of research dollars per affected individual was just $0.93 (National Institutes of Health, 2011).”
So uhhh, yeah, eating disorders are kind of important to address yet fairly neglected in our society despite significant evidence demonstrating the seriousness and prevalence of this illness. I hope this helps explain why I have a problem with the lack of information and misinformation provided regarding eating disorders.
This struck me hard earlier this week during one of my intakes. I sat in session with a mother and her daughter who was seeking help for her eating disorder for the first time ever despite demonstrating symptoms for years. As the daughter described her relationship with food to me, it was clear that she had an eating disorder. She was deeply stuck in the restrict/binge cycle and overwhelmed with concerns about her body weight, size, and shape. She expressed feeling out of control around food and constantly anxious about the effects her eating would have on her body. She expressed how her eating negatively impacted her life, her relationships, and her overall wellbeing. From my perspective, it was a pretty clear representation of an eating disorder.
During this session, I soon began referring to my client’s relationship with food as an eating disorder as she met full criteria for an ED diagnosis. I feel that it is critical to name the illness for what it is given its seriousness and the urgency of treatment to prevent further damage and poorer prognosis. Near the end of the session, my client’s mother interrupted me to ask why I kept referring to “this thing” as an eating disorder. The mother was a physician. I put on my best poker face and calmly explained the disordered qualities of her daughter’s relationship with food and body, highlighting her daughter’s personal distress. As I continued sharing this information, my client’s mother interrupted me once more stating that she thought we didn’t need to diagnose “this thing” because her daughter was not throwing up.
While I have a lot of compassion for what it must be like to hear that a loved one is struggling and has an illness, my ability to empathize stops when I hear invalidation and neglect, especially coming from another helping professional.
During the remainder of the session, I did my best to simply stress the seriousness of the issue and the importance of receiving adequate treatment from an eating disorder professional, whether at our clinic or elsewhere. I do not know if this client will return, but I hope more than anything that she receives the help she deserves.
For the remainder of the week, the mother’s words, “It’s not like she’s throwing up,” rang through my head. I thought this is why people don’t get help, this is why people’s struggles go on for years, this is why so many people with eating disorders die, this is why prognosis is so poor. I do not entirely blame my client’s mother for her ignorance, despite her education and training. Rather, I blame the impact of society and education systems for the misinformation my client’s mother possesses with regard to eating disorders.
Today, most people believe that eating disorders either look like a skeletal white woman or someone who throws up after eating. Binge Eating Disorder only became an official diagnosis in 2013 and the DSM continues to prove imperfect. Furthermore, the large majority of eating disorder diagnoses fall under the “unspecified” and “not otherwise specified” categories, meaning that they do not meet full criteria for any of the three diagnosed eating disorders: Anorexia Nervosa, Bulimia Nervosa, and Binge Eating Disorder. In fact, true Anorexia Nervosa has the lowest prevalence of all eating disorders, yet the anorexic’s body continues to function as the default for what an eating disorder should look like.
Even though eating disorders affect approximately 1 in 10 women (and 3 out of 4 women are likely to engage in disordered eating behaviors), doctors continue to underdiagnose, misdiagnose, and neglect the diagnosis of eating disorders. And I get it, there’s discomfort in breaching the subject with a patient or their family. I know. I have to do it daily in my job. However, many patients are waiting for someone to breach the subject and that just might be the one opportunity in their life to turn things around.
I remember going to a doctor in twelfth grade when my weight had already dropped significantly and my eating disorder was stronger ever. I went to the doctor because I hadn’t gotten my period in about half a year and even I was concerned at that point. Looking back on it now, I know that I was experiencing a classic symptom of eating disorder restriction: amenorrhea. My mom took me to who I believe was her OBGYN, but I’m not entirely sure who this lady was. She informed me that I had lost my period likely due to having low body fat and a low weight, yet she completely neglected to ask me about my eating habits or screen for any sign of an eating disorder. And here I was: an adolescent girl at a low weight for my height who had gone without my period for over half a year at this point. The doctor simply sent me home with some pills that were supposed to help bring my period back (and didn’t), and that was the end of that. I often wonder what would have happened if she had simply asked about my relationship with food and my body.
You see, even when a patient comes in with the classic signs and symptoms of an eating disorder, doctors often fail to address the topic. IT’S CRAZY TO ME!!! Seriously, 10 % of your female patients will likely meet criteria or at least demonstrate signs of a disordered relationship with food and body, yet this continues to go unaddressed?!
Again, I don’t entirely blame the individuals in these incidents, I blame their training (or lack thereof in the field of eating disorders) as well as the image of eating disorders that has been painted by the media and society at large. As I stated earlier, our society possesses a singular perception of eating disorders: a skeletal white woman. The fact is that eating disorders come in all shapes, sizes, and forms.
Eating disorders have no set size, gender, age, ethnicity, race, or any other singular factor. Any person you see regardless of their appearance may be struggling with an eating disorder and their weight does not dictate the severity. We need to stop assuming that eating disorders come in one form with a single setlist of behaviors. Eating disorders do not discriminate and should be taken seriously in all cases regardless of the individual’s appearance.