From Mirasol ED Recovery Guest Blogwriter ~ Faith
As with any mental health diagnosis, eating disorders come with many stereotypes. Most often, eating disorders tend to be oversimplified by the general public as merely a reaction to social pressures about food and body image. Or, it is assumed the patient is probably just victim of exposure to a sport or industry that pressures people to maintain low body weights.
With steady diagnostic surge among males and the rise in increasingly younger AND older patients, the outdated image of the white, middle-to- upper class teenage female no longer works when we’re talking eating disorders.
Incredibly complicated diseases, most recent research suggests eating disorders actually result from a complex web of factors interplaying into the perfect storm. Genetics, social & familial factors, neurobiology, stress, and physical illness are just a few examples.
Eating disorders are further complicated by the fact that they are not just mental health issues. While the mental aspect is incredibly debilitating, the patient may also be suffering with complicated medical issues, which also need to be treated. In some cases, the medical issues may need to be the primary concern and treated first.
With their alarming mortality rate surpassing any other mental illness and half of the deaths resulting from medical complications, acute attention must be paid to each patient’s medical stability. Stereotypic images of stick thin, media-hyped models like “Twiggy” and “Kate Moss” along with assumptions of “teenage angst” leave many doctors overlooking the severity of a patient’s physical condition. Surmising everything as a routine “phase” can lead to failure of thoroughly examining co-occurring or underlying medical complications like gastroperesis, a condition where food is slow to leave the stomach.
Though still underfunded, eating disorder research continues to progress every month. We now know gastrointestinal distress commonly correlates with eating disorders. So far, though, it is assumed that the eating disorder causes the digestive distress.
While some cases may be logically explained by a history of prolonged disordered eating, what if this is the root factor issue for others?
GI issues, such as gastroparesis, GERD, and colonic issues, can actually pose a close presentation to anorexia or bulimia when people begin to fear food and the discomforts of digestion. I’m left wondering how often digestive disorders are assumed to be eating disorders and misdiagnosed. Including the diagnosis of a mental illness in one’s chart changes the course of the medical care one receives and should be decided with thorough consideration.
Patients with core digestive issues are at risk of being treated improperly by the mental health system. The primary diagnosis as eating disorder sends the patient down the path of behavioral and mental health based care, where actual “true GI issues” are often minimized or ignored. Because of the “eating disorder” diagnosis, the patient is assumed to be fabricating the distress to get out of eating. Other times, the facility is just ill-equipped and inexperienced at managing the patient’s particular physical issues.
I know someone suffering with GERD and gastroparesis, who was misdiagnosed in the beginning of her illness. It is possible her initial symptoms could have been controlled with prescription medication. Almost a decade after “x” number of eating disorder program admissions, for an eating disorder she doesn’t think she even had to begin with, she now has to have a feeding tube and possibly additional surgeries.
Thousands of dollars have been spent on “conventional eating disorder treatment centers” that repeatedly missed the target. It also seemed to introduce her to a culture of “ED” that she never knew existed before. While rare, it is almost as though she learned how to have an actual DSM-V eating disorder by being in the wrong level of care.
Where do we go from here?
First, we need to continue to push for research funding toward eating disorders in general. For example, The NIH has allocated only $1.20 in research funding per affected eating disorder patient, compared to $159.00 per affected individual for schizophrenia, less than 1%.
Following suit with recent research data, eating disorders and feeding disorders have been coupled together in DSM-V. For example, anorexia and avoidant/restrictive food intake disorder are in the same category. Evolutions in eating disorder diagnosis have occurred in each of the most recent revisions to the DSM. It seems logical that some digestive and gastrointestinal disorders may also impact food behaviors that result in weight changes, food intolerances, preoccupation with food, and body image distress.
Physicians need to be mindful of this possibility as many of these same complaints come from patients with eating disorders, blurring the diagnostic lines leading to possible confusion and diagnostic error.
In the case where both digestive issues and eating disorder issues are present, individualized care is absolutely vital. Special accommodations not normally thought of as acceptable by eating disorder programs may be necessary, such as supporting a dairy-free or gluten-free diet.
If treatment providers could approach each patient as if they were assessing an eating disorder for the first time, fewer assumptions would cloud their ability to make a complete and thorough assessment.
Editor’s response from Mirasol ED Recovery Blog Publishing Editor:
My first read through of Faith’s blog sent chills down my spine. I had to include my response because only in the last couple of months have I connected the dots between my own eating disorder and digestive distress.
I have high functioning autism traits and am easily fixated. I always had a heightened interest in food. I loved to play restaurant, make mud pies, and even had a toy grocery cart full of plastic food.
I also had a lot of extreme food dislikes and food preferences.
Eating is a multisensory experience, from the taste, texture, temperature, and even the sound of eating.
My sensory issues probably contributed a bit to my lengthy dislike list as a child, but I now wonder how much of this was also my body’s intuition telling me to stay away from foods that were causing physical distress and discomfort! In fact, it’s taken me several years of experimentation to find food combinations that work best for me. Though completely balanced with ample variety and nutrient content, most non-integrative treatment centers would consider my eating preferences eating disordered. Looking back, many of my “odd” food preferences were things that were naturally soothing to my digestion.
Basically, I’ve always had food stuff, eating disorder or not. Laxative, suppository, and enema abuse presented as my first clinically detectable eating disorder behavior, which all started at age 10. After having to receive an enema for severe constipation due to IBS, I was instantly hooked on the sense of relief from having a cleared out colon after such prolonged
This also happens to be the age when I developed suicidal ideation that eventually became chronic suicidal obsession. Stress and anxiety attacks usually correlated with more IBS flares and spasms. Of course prolonged laxative abuse only exacerbated the GI distress.
A a lot of factors merged together to create grounds for my perfect storm. In addition to depression, autism, and gastrointestinal distress, I also felt the social pressures to be thin. I was bullied for many things, including being chubby. Perfectionistic in nature, I once checked out all of the eating disorders books available at the school library. I have an innate drive to be good at whatever I do, and the eating disorder was no exception. I became especially pre-occupied with becoming emaciated, which only worsened after my first inpatient stay, further triggered by exposure to severely ill patients. I didn’t openly admit this at the time but I also adopted a lot of ED rituals out of desire for belonging in the ED community. Socially awkward, I desperately needed to fit in somewhere. I definitely didn’t fit in at school or home.
Eventually, and it actually didn’t take long, the eating disorder became my entire world.
It leaves me wondering how the course of my life may have unfolded had my ASD and gastrointestinal issues been diagnosed when I was a tender ten.
When I was in treatment, I always complained to treatment providers of distracting sensitivity to my digestive track while following prescribed meal plans. I routinely experienced bloating, pain, constipation, diarrhea, and even hemorrhoids. Without exception, my voice was always dismissed as eating disordered thinking or ordinary body image related distress.
Digestive Disorder? Eating Disorder? Both? Great topic, Faith!