Lots of ink is been spilled on the subject of the stigma associated with having an eating disorder. And in order to discuss the subject sensibly we need to get a few terms straight. It was considered a giant step forward in our field when Dr. Thomas Insel, head of NIMH, began blogging, writing and speaking about the fact that all mental illnesses are brain disorders, and that anorexia nervosa in particular was a severe mental illness. Prior to that it had been possible to trivialize anorexia nervosa as a psycho-cultural dysfunction, a “choice”, the result of family dysfunction, and/or attributed to reading too many fashion magazines. Bulimia nervosa had even been described as “regurgitating the mother”.
A new era of understanding the brain has brought some clarity to the subject, but hasn’t really touched the issue of stigma.
So, if eating disorders such as anorexia nervosa are severe mental illnesses, and by definition brain disorders, I think it seems clear that disorders of the brain should be no more stigmatized than disorders of the pancreas, disorders of the heart, or disorders of the liver. As the pancreas produces insulin, the brain produces behavior, and this, I think, is what lulls us into believing that disorders of the brain are somehow “different”.
What to do about the stigma? It is first important for us to examine our own role in furthering any stigma associated with eating disorders. Let’s start with doctors.
To be more specific, let’s start with psychiatrists. It has long gone unchallenged that a higher level of “privacy” needs to be afforded psychiatrists, who, after all, deal with mental illnesses. It is not uncommon for psychiatrists and other therapists to have waiting rooms that do not allow patients to see each other or to know who else might be waiting, they may even have separate entrances and exits for this purpose. On the face of it that sounds good, but what’s the message?
The message is that, contrary to a visit to a gynecologist, which certainly can involve information as sensitive as any psychiatric information, a visit to a psychiatrist needs to be kept “private” (read: secret). Your gynecologist might say hello to you in the grocery store, your psychiatrist will probably act as if they do not know you unless you acknowledge them first. Again, what’s the message? Psychiatric medical records are treated differently than other medical records. On Epic, a widespread form of electronic medical record, even other doctors cannot access a patient’s psychiatric records without first “breaking the glass” to enter über-protected territory. As long as we physicians continue to treat brain disorders differently than other disorders, we too are responsible for perpetuating the stigma.
As parents we are naturally protective of our children. It’s not uncommon for people to enter online forums anonymously, and the most cited reason for such anonymity, is to protect the privacy of their child.
I think we must boldly ask ourselves, though, whether we are protecting our child’s privacy or we are somehow buying into the belief that mental illness is a “flaw” in our child, in our family, in ourselves. Some families choose to conspire to keep the fact of their child’s eating disorder from their school, from their church, and even from their friends. Occasionally even other family members are left out of the loop. And while I completely sympathize with attempts to “control the message” at the time of initial diagnosis, I think that in the long run it will be critical to unambiguously send the message to our own family and our own children that there is no reason to feel stigmatized for having an eating disorder. And that, in fact, to the contrary, we will fight this false belief together. As Pogo said “We have met the enemy, and he is us”. Only sunshine into the dark places will evaporate this unnecessary pain.
Once upon a time tuberculosis was a terribly stigmatizing illness. Even now, when taking histories from some Southeast Asian families, it is common for the fact of a family member’s tuberculosis to be concealed. It is medically unhelpful not to know who is vulnerable to what disease, but the stigma of TB was, and to a certain extent still is, far too great for many families to challenge.
With the evaporation of insurance denials based on “pre-existing conditions”, we no longer need fear that our child will not be able to get insurance if the fact of their eating disorder becomes known. With the many recent articles on the genetics of mental illnesses, the public statements reiterating that families do not cause eating disorders, and the air-clearing acknowledgment of eating disorders as brain disorders, we can finally begin to attack the stigma together.
Let us not be that enemy. For the sake of our children and all children, let’s find the courage — whether we are physicians, therapists, dietitians, parents, or patients — to cease contributing to the stigma, to stand our ground, to turn around and fight back.