What If Your Doctor Didn't Realize You Had An Eating Disorder?
Updated: Aug 29, 2019
Out of the worldwide estimate of 70 million people with eating disorders in their lifetime, 30 million of those are believed to live in the United States. In a lot of cases our Doctors are often our first responders as far as recognizing, diagnosing, educating and referring us to specialized eating disorder treatment.
Having a mutually trusting relationship with our PCP is important. In large part because they are usually our first line of defense. Something’s wrong and we have no idea what it is… we go to the Doctor. We think we might have an unhealthy relationship with food and it’s beginning to take an obvious toll on our bodies… we go to the Doctor. That’s why Doctors could be such amazingly helpful resources when it comes to identifying eating disorders. Unfortunately, they can also be a hindrance.
It honestly pains me to realize how these key players aren’t realizing their full potential in this area… and how much damage that can (and does) do. There are other key players of course… parents, teachers, friends, coaches, church family, co-workers, therapists, personal trainers, etc. But for this post we’re focusing specifically on Doctors. Even more specifically our Primary Care Physicians (PCP).
According to Brené Brown, Ph.D., LMSW where credentials are involved (i.e. MD, OB/GYN) we tend to stay silent, assume that the credentialed are always objective, base their advice on proven science, are always right and above questioning. To question, contradict or disappoint these highly educated people is a huge shame trigger for a lot of us. (1) Shame says, “Who am I to doubt these people”? "Who am I to question the Doctor when they say I don't have an eating disorder, I just need to lose weight?"
My point in writing this post is two-fold. First, to encourage all of us not to walk away from (or avoid completely) the Doctors who could help us because we fear the terrible feeling of shame and stigma. Second, to offer some ideas of what we can do to step into that gap where it exists and make sure we get the care that we need.
I believe this need for "eating disorder first responders" is increasing with the rise of Orthorexia. We’ve also looked at how easily Orthorexia could go undetected in the sea of avid clean-eating dieters and hard-core exercise lifestyles. There are a lot of reasons why Doctors might miss an eating disorder. Here are just four. For the record, I definitely would not consider this an exhaustive list. So. What makes it so difficult for doctors to diagnose eating disorders?
Here are some of the reasons I can see why eating disorders go unchecked, unnoticed and uncared for when it comes to our PCPs.
They're undertrained when it comes to eating disorders. Given the growing prevalence of eating disorders in the United States, Doctors still receive a shockingly disproportionate amount of training about them. I was really surprised to learn that at some medical schools, Doctors receive 0-1 hours of eating disorders training. Zero. In some cases Doctors do have access to eating disorder rotations, but even then the vast majority begin their careers feeling ill-equipped to actually deal with them. (2) This means that they can easily invalidate. Even unintentionally. Under-trained also means that Doctors may be looking for eating disorders in a very limited population- extremely thin, young, white females. We know now that that stereotype is dangerous and way WAY off. Eating disorders are mental illnesses that can affect anybody.
We’re under-educated about Eating Disorders ourselves. As patients we don’t think to mention our eating and exercise patterns or certain symptoms that seem unrelated. We’re unlikely to feel the need to share our struggle with controlling our food and body when we think it is just a matter of our lack of control rather than a problem with our need to control it in the first place. In the case of Orthorexia, we may even consider ourselves extremely healthy people.
Doctors may go purely based off of weight. Doctors may encourage healthy eating and strenuous exercise without asking about specific amounts, levels of intensity or our attitudes toward them. They may even unintentionally encourage overexercising and undereating it if we land within or above their range of “normal” weight. Stigma around obesity in the medical community may contribute to confusing prescriptions. Doctors may offer mixed solutions such as, “try not to eat too little but definitely be careful NOT to eat too much”. The underlying fear of obesity among medical professionals can really trip up a person who is already paralyzed by that fear. An undertrained Doctor might not realize how important this is.
Stigma and shame. If we’re already insecure around being perceived as weak or out-of-control or flawed, we're easily susceptible to shame which keeps us quiet. If we hear our doctor talk about eating disorders in a shamefully degrading way, then we’re unlikely to want to associate ourselves with them. If our Doctor dismisses the possibility because we don’t fit a narrow stereotype of what people with eating disorders “look like”, we might not want to contradict them. Not when the alternative feels so shameful. If our Doctor uses a carrot-and-stick approach to get us to reach some pre-determined lower weight, we’re unlikely to tell them when we are struggling with binge eating. Misinformed Doctors might think that eating disorders are simply a matter of “trying harder” to do what they say or are just us flat out rebelling against their “Doctors orders”. This kind of misinformation leads to damaging frustration on both sides.
Here’s one example of how this could play out. A low heart rate. A low heart rate from heart damage (malnourished and over strained) can easily be dismissed as a “healthy low resting heart rate” as seen in serious athletes and runners. Especially if we fall into a “normal” weight range and exercise regularly. Since it’s not uncommon to over-exercise with an eating disorder we may be proud (rather than concerned) that our heart reflects all of our hard work. In which case, we’re less likely to question the possibility that the extra low heart rate could be a sign of something much more concerning. Even when we’re simultaneously experiencing decreased energy, sluggishness, lightheadedness and occasional heart palpitations.
So what can you do about it?
Be your own advocate. It is helpful to realize that even with the best intentions and so many years of training, Doctors don’t get everything right. They are also humans influenced by society… just like us. Once we realize this, we can gently and firmly advocate for ourselves. We can question treatment plans that involve “healthy” diets promoting restricting out of fear of “too much” weight gain.
Validate your own symptoms and observations. Pay attention to physical symptoms that seem normal to you but may actually be your body trying to tell you something. A lot of the times when we’ve had a symptom for so long it seems normal to us and we can easily assume that everybody has that same symptom. In that same vein, we may also have apparently unconnected symptoms that seem unexplainable. Is it possible that those symptoms are pointing to disordered eating or an eating disorder?
Do your own research. If you have a history or seriously controlling your food intake and/or exercising to the extreme, then it could serve you well to consider the impact that has had on your body. Whatever your shape and size may be.
Take an online self-assessment and call a treatment center for a free consultation. These people are trained in identifying eating disorders and understand the stigma around them.
Bring a trusted friend or family member with you to your doctor appointment. If you think shame might keep you quiet and keep you from asking questions, saying how you feel or what you need, then have someone there with you. It’s also a good idea to bring a friend if your physical symptoms might keep you from being fully engaged in your MD appointment- i.e. if you’re feeling dizzy or lightheaded, extra fatigued, foggy-brained, sluggish from low heart-rate, sleepy, extra irritable, difficulty concentrating, etc. It may also be a good idea even to have somebody drive you if you’re having symptoms like these. It can be easy to minimize the severity of lightheadedness and grogginess.
Change Doctors. If you don’t think you are getting the treatment that you need, consider finding a new doctor who has been trained in, specializes in or works specifically with people with eating disorders if possible.
(1) Brené Brown, "I Thought It Was Just Me (But It Isn't)"
(2) Andrea, Science of Eating Disorders, "Is the Doctor in? Eating Disorders Training Amongst Medical Professionals- Part 1", June 13, 2015