10 Things I Wish Everyone Would Know About Eating Disorders
by Edward P. Tyson, MD
1. Eating disorders are potentially lethal illnesses, and no one should take them lightly as “It’s just a phase she’s going through,” or “He’ll grow out of it,” or “But she has the state meet to run in next week,” or “I feel fine and I don’t really need all these appointments.” Those are all examples of the denial of the stark reality of an eating disorder—these are deceptive, debilitating, dangerous illnesses. Make no mistake about it.
2. Do not treat those with eating disorders—that is for professionals trained to do so. But do not underestimate what you can do—you can do more than even a treatment team if you love the person who suffers and provide support with your confidence in that person. Keep reminding your loved one that, yes, it is the hardest work she or he has ever done, and if this person keeps working with the treatment team, she or he will succeed and have a life beyond anything imagined. People with eating disorders need the support of loved ones to help them through the dark times and to celebrate the successes and joy of good times.
3. Whenever possible, a treatment team is optimal. The team should consist of a physician, therapist, and dietitian, all of whom are skilled with eating disorders. A psychiatrist may also be needed to be part of the team. Finding team members skilled in eating disorders, especially physicians and psychiatrists, can be difficult, and there are many geographic locations where one would be lucky to find even one team member with skills in treating eating disorders. But find a team wherever you can.
4. Eating disorders do not go away on their own. They do not go away because one finds something else, like running or bodybuilding, or performing or some other diversion. They will last a lifetime if one does not receive adequate treatment—treatment that is intense enough and for a long-enough duration. One should not stop because one “feels better.” Ultimately, of course, one should feel better, but that is usually after dealing with some very difficult issues, and it is really best that the experience of the treatment team dictate when treatment intensity or frequency should be increased or decreased, or when a person no longer needs treatment.
5. Eating disorders do occur in celebrities—no one is immune. Because celebrities gain notoriety or are public about their eating disorders, it is easy for the public to believe that only celebrities or the rich and beautiful get eating disorders. But eating disorders can and do occur in anyone. In my experience, those who get eating disorders are special gifted people. Almost universally, they are empathic, intuitive, hardworking, and gifted in at least one of the following (and often more than one): academics, athletics, and creative expression. Some of these qualities can be hard to see if one is in the throes of an eating disorder, but when well or in recovery, those traits reemerge. That is why I call eating disorders “The Curse of the Blessed.”
6. Eating disorders are a problem throughout the world. I know of clinicians in Zimbabwe and Tanzania who treat eating disorders. No country is spared. For example, extrapolated statistics indicate that there are about 24 million eating-disordered individuals in China and 2.5 million in Japan. Sadly, trained and expert resources in most foreign countries are rare, making accessibility and availability of treatment quite difficult.
7. Eating disorders are called psychiatric disorders. However, medical issues in eating disorders are always present during much of the illness. In fact, it appears that eating disorders may be triggered by some physical events, such as starvation, especially when coupled with exercise. Probably the most common history my patients tell me is that they did what everyone hears we are all supposed to do: “Eat ‘healthier’ and exercise.” So they do just that. They start changing what they eat, usually reducing portion sizes and decreasing “junk” food. This progresses to more and more restriction, all with good intentions. And exercising increases. It all increases more and more and more. Then the person finds herself or himself in an avalanche unable to stop. There was not a mind-set of wanting to have an eating disorder; it was only to be healthy. So it was not a pathological psychiatric condition that set it off, but actually a reasonable one. The physical results of not having enough nutrition itself seemed to set off the disorder. True, there may have been some underlying brain and/or psychological underpinnings that helped these behaviors turn into an eating disorder, but had it not been for physical changes, it is unlikely the eating disorder would have developed.
8. The mantra that we should all eat less and exercise more is something that those who are vulnerable to eating disorders hear and may take to an extreme. The problem with platitudes like this are that they can cause harm and should not be pronounced as universal truths. Many who present in my office are very athletic and were not overweight. They hear that edict (often from parents or other loved or respected ones) and believe it must apply to them, too. That whatever they are doing, whatever successes they are having in their sport, is still not good enough—hence, they must eat less and exercise more.
I am reminded of the studies done where rats are randomized into two sets of cages. One set consists of basic cages with wood shavings and water. The other set of cages is the same, but each has a wheel added. The food provided is reduced equally to the two groups to a starvation degree. Over time, as malnutrition sets in, the rats in the cages without the wheel conserve energy, as one would expect, by sleeping more and moving less, and when they move, they do so more slowly. In the other cages, and at the same level of malnutrition, the rats run on the wheels compulsively and will run until they die. Providing more food does not reverse this behavior. The wheel must be removed or the rats must be put in a different cage without a wheel where they also must be provided with adequate food. This paradoxical dangerous response is not because one rat told another that its tail might be a little too wide. It is a purely physiological response. So many patients I have seen in my practice remind me of this scenario.
9. Exercise is part of a healthy balance in one’s life. In eating disorders, and in those conditions leading up to an eating disorder, exercise can take on a different role in one’s life. When exercise becomes a dominating part of one’s life, or one feels oppressive guilt at missing or not advancing exercise, or when the body starts to be injured by the exercise, the role of exercise needs to be restructured. Exercise in eating disorders can be one of the most lethal complicating parts of the disorder. A physician who knows how to monitor for signs of impairment from a restrictive diet and excessive exercise should determine levels of activity—NOT a parent, or coach, or the individual athlete—only that physician.
10. Because medical complications occur in all eating disorders, competent ongoing medical assessment is necessary. Too many therapists, dietitians, and even psychiatrists are seeing people with eating disorders with no medical input. This is understandable to a degree, as there are many areas where physicians who will see those with an eating disorder are very hard to find. The Academy for Eating Disorders (AED), the International Association of Eating Disorders Professionals Foundation (IAEDP), and EDcatalogue.com all have lists where the public can look for medical providers (www.aedweb.org, www.iaedp.com, and www.edcatalogue.com, respectfully). My recommendation is to tell the patient and/or the family to at least see a primary care physician anyway and bring with them the guide from the AED, “Eating Disorders: Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders” (http://www.aedweb.org/web/index.php/education/eating-disorder-information/eating-disorder-information-13). Insist that at the minimum this guide be followed for the medical assessment. Also, nonmedical clinicians, sufferers, and families and loved ones should approach different medical providers (physicians, nurse practitioners, and physician assistants), asking if they would at least be willing to try to provide quality medical care for eating disorders. If nothing else, you can say you are looking just for volunteers, not even experts. Not uncommonly, a physician just starting a general medical practice (family medicine, internal medicine, pediatrics, adolescent medicine), or a physician assistant or nurse practitioner, will be more likely to be willing to volunteer. Consider asking them to read my “Ten Things I Wish Physicians Would Know About Eating Disorders” (https://www.edcatalogue.com/ten-things-wish-physicians-know-eating-disorders). Reassure them that they will not regret helping those who have eating disorders and that they’ll be lucky to have them in their practice.