Illness cannot always be measured, and neither can wellness. This is one of the great medical challenges facing those with eating disorders, where often the act of measuring becomes the obsessive focus of life: how many calories/miles/pounds/steps?
Unfortunately, the Western medical system—of which I am a proud member, even while realizing its limitations—further puts the focus on measurables. In our strained system, patients can get triaged into “ok” vs. “sick” based on numbers that may have little to do with their overall suffering. No one would question that certain measurable values carry clear and present danger: an abnormal potassium level, sodium level, bicarbonate level, measure of kidney or liver function, or a very low body weight.
We are grateful to Carolyn Costin for this wonderful post!
Thanksgiving is such a good marker of time and measurer of recovery growth. I can’t remember how bad my eating was on April 5, 1977 or June 14, 1978, but I can remember what I ate on November 24, 1979 at Thanksgiving because it was the first time I was able to eat Thanksgiving dinner and be okay, really okay about it. And every Thanksgiving dinner after that for a long time kept getting better. In some ways that is still true because it is such a great marker for me to go inside and remind myself about where I have come from and how very very hard it used to be.
With the holiday season upon us, many people feel a mix of excitement and dread. The reasons for excitement are clear, while the reasons for dread may not be understood by well-meaning families. Folks who live with weight stigma and those who struggle with an eating disorder (of all shapes and sizes) may struggle through family gatherings, in which societally-approved topics of conversation unfortunately often include judgmental commentary on bodies, weight, and dieting. These conversations can be immensely painful and triggering. They can also threaten to undo therapeutic progress around our commitment to being kind and compassionate with ourselves.
If you or a loved one has an eating disorder, odds are that you have been failed by the outpatient medical system. That’s a big word — failed — and I don’t use it lightly.
Many of my patients tell me frankly that they don’t trust doctors, and they have good reasons. Office staff might make comments like, “Oh, you’re so thin! What willpower you must have,” dissolving a fragile intention to admit to an eating disorder and seek help. Some doctors can buy into the eating disorder’s logic and agree, “Yep, your heart rate must be 30 because you’re an athlete,” and the patient returns to their frantically worried therapist saying, “The doctor says I’m fine.” Patients are often given the message that they’re “difficult,” need to “just eat,” or feel shamed by an exasperated physician. Above all else, the average eight-minute appointment cannot possibly begin to serve the needs of a patient and family who need the opportunity to tell their whole story. Frequently, patients don’t even get time to reveal their eating disorder during an eight-minute visit. Small wonder those with eating disorders, and their families, have developed an aversion to doctors!
I’ve been lucky enough to work with patients who struggle with eating disorders for the past eight years. I adore my patients, and there are so many reasons why they inspire me.
First of all, I chose internal medicine after medical school because I love the idea of caring for the whole person and collaborating with my patients on their health care plan. Patients tell me their story, their hopes and fears, and are the expert in themselves. I bring to them my expertise in medical diagnosis and treatment.
Using language the patient connects with, and framing new or chronic medical problems in the context of each individual’s life, I give my patients a voice. This lets me be more responsive to what patients actually need from their doctor, so they don’t feel talked down to, rushed, or not seen. The mind-body connection is something I deeply believed in even before I started seeing patients with eating disorders. Who people are as individuals, set in the context of their culture, social experience, family, interests, values, and beliefs, privilege or lack thereof, absolutely affects their physical health.
We are grateful to Carolyn Costin for our first guest post and hope you enjoy her beautiful words!
Tonight is All Hallows Eve or Halloween. In some religions it is the Eve of All Saints Day, November 1, where we honor and pray for those who have died and are in Heaven. The next day, November 2, is All Souls Day, where all who have died are prayed for.
Many believed that during this time the veil between two worlds was lifted and spirits or ghosts would be about. To scare away evil spirits and prevent them from identifying people, scary masks were worn hoping this would trick the spirits and keep them away.
Tonight is a good time to pay attention to a mask you wear all the time, to protect yourself, but perhaps have forgotten you have on.
That voice in your head is as familiar as it is judgmental and unkind: “You’re not good enough. You’re not thin/disciplined/organized/accomplished enough. You’re not meeting expectations as a partner/sibling/parent/child/professional/student. You haven’t done enough today to deserve rest and self-care.” So many people walk around every day with some version of this voice in their heads. And all too often, the next step is to take it out on your body, imagining the voice could be satisfied, or “good enough” could be achieved, if somehow the ideal body shape/size/nutrition plan/exercise regime could be accomplished.
Expert Advisor to Monte Nido Jennifer L. Gaudiani, MD, CEDS is nationally known for her work on the medical complications of eating disorders. She recently opened the Gaudiani Clinic, a unique outpatient medical clinic specifically dedicated to adults with eating disorders. Dr. Gaudiani shares her expertise in this week’s blog post where she discusses her work with patients struggling to ignore their eating disorder voice telling them “I’m fine”.
One of the greatest and deadliest ironies of eating disorders is that the eating disorder voice often tells you, “You’re fine.” No matter that trusted and loved people in your life say how worried they are and point to evidence both physical and psychological that you’re not You anymore, the eating disorder voice whispers so convincingly, so cruelly, “Actually, you’re fine. There’s no need to let up on your rules. In fact, tomorrow let’s take it further.” Your mother might have been crying earlier that day about how worried she is, your therapist might be threatening to terminate the relationship unless things turn around, you honestly aren’t feeling that great, but just one call from one poorly informed doctor’s clinic that briefly tells you, “Your labwork came back, and it’s fine,” and BOOM, the eating disorder says, “See? I told you. Push onwards.”
I’ve gotten a few requests from folks to discuss key questions about eating disorders and child-bearing. I’ll use excerpts from a chapter I just wrote in Encyclopedia of Feeding and Eating Disorders for Springer Reference. I think the key questions are: do women with eating disorders seek more fertility help? What are pregnancy outcomes in women who have had an eating disorder? How does childbearing affect mortality rates in those with a history of anorexia nervosa (AN)? And finally, how does pregnancy itself affect eating disorders?
To get and stay pregnant, an immense number of things must “go right,” among them a reasonable nutritional status and adequate body weight for ovulation to occur. Even some modern day healthy bodies in women without eating disorders may simply be too underweight, from Mother Nature’s perspective, to conceive a baby. Purging, and the psychological stressors that drive purging, may also impede fertility. A large study showed that 16-20% of women attending fertility clinics had eating disorders. This is a way higher number than the population prevalence of eating disorders. Relative to women with no psychiatric disorder, women with bulimia nervosa in particular had more than double the rates of having undergone fertility treatment. Another study showed that 7.2% of eating disordered patients who had previously received residential treatment sought infertility treatment, compared with 4.5% of those without an eating disorder.
When patients have lost a lot of weight, or are quite underweight, they may experience difficulty swallowing. It might be that dry foods feel like they get stuck in your throat, or that you’ve naturally moved toward moister foods because they’re easier to get down. It might be that you’ve found yourself coughing after drinking liquids, or that food or liquid seems to “go down the wrong pipe” more often. This condition is known as dysphagia.
Dysphagia (pronounced dis-FAY-juh) refers to dysfunction in the swallowing muscles. Usually, when you swallow a bite of food, your mouth and throat muscles naturally guide the food down your esophagus and into your stomach, blocking off your airway briefly in the process so that food and bacteria don’t end up in your lungs. But in anorexia nervosa—restricting or purging subtype—those swallowing muscles get just as thin and weak as your other muscles, and they can’t do their job as well. Reflux, in which acid contents from the stomach flow up into the esophagus, can independently cause dysphagia, or can make dysphagia from an eating disorder worse. The risk is that when your swallowing muscles get weak, food, liquid, and even bacteria from your saliva may not actually end up in your stomach.
Once again, I’m going to discuss a topic that can help you combat the “I’m Fine Syndrome” – a term we at the ACUTE Center for Eating Disorders use to explain when a patient is in denial about the severity of his or her eating disorder. The subject is temperature regulation, and this one isn’t about life-threatening medical complications so much as it is about knowing your body when you’re in your disorder so that you can use good objective evidence of body suffering with your wise mind in order to combat the mean lies and distortions that your eating disorder whispers to you.
When you’re not eating enough, your “cave girl brain” (the one responsible for controlling body processes and species survival) assumes that you must be in famine, so she sets to work doing everything in her power to keep you alive. She starts by slowing your metabolism way down and does this by turning down your inner furnace – aka: your body temperature.
Many people with eating disorders are in denial about the severity of their illness and believe that they are fine – something we at ACUTE term the “I’m fine” syndrome. Despite family, friends, and colleagues expressing their worry over food habits, withdrawal from previously enjoyed activities, and health issues, somehow the eating disorder makes people ignore the concerns of their loved ones. They think that because they can still engage in their normal, everyday activities including going to school, work, exercise, hobbies and social events, that there must be nothing wrong with them. Well my friends, this is absolutely not the case.
In restricting disorders, blood tests are often normal because there isn’t any sort of electrolyte loss through purging. In addition to the already existing denial, these normal blood tests can further contribute to the “I’m fine” syndrome. Well-meaning primary care providers can unwittingly contribute to this issue by focusing too heavily on measurable data (i.e.: potassium levels) and not on the whole person…the person who is clearly NOT fine!
Hypoglycemia is a medical term that refers to low blood glucose levels. In effect, a healthy body will metabolize what you eat and break down carbohydrates into sugars, which are absorbed into your bloodstream and form a key nutritional element – glucose -- needed by your cells. The brain in particular can only run on glucose -- not on protein or fat. In between eating, when you’ve fully metabolized your last meal, your liver synthesizes glucose for you and puts it into your bloodstream, so that you always have sufficient blood glucose levels to fulfill your body’s need. To go over all the ways blood sugar goes awry would take textbooks! But let’s talk about what can happen in anorexia nervosa.
With anorexia, the liver becomes depleted of the chemical building blocks needed to create glucose, as well as depleted of glycogen, which is key to maintaining a good blood sugar. That means between meals—and for people with eating disorders, those meals are often inadequate, calorie-poor, and imbalanced—your body may stop being able to sustain blood sugar.
Many patients with eating disorders are highly intelligent and very emotionally intuitive...great traits, and ones often accompanied by a truly sensitive soul. Many of my patients glow a little too much when praised, and can withdraw like a closing sea anemone when criticized or corrected. I think of this sensitivity as the darker or more difficult side of a two-sided coin – the other side being incredibly bright and representative of a patient’s intelligence, work ethic, and thoughtfulness.
Frequently, folks who have this very bright/dark sided coin start experiencing belly pain, nausea, or other digestive issues very early in life – sometimes as early as elementary school. Although these symptoms feel very, very real, doctors keep telling them that they are “fine” - something they have been repetitively told their entire lives. This unexplained digestive discomfort/dysfunction is often diagnosed as Irritable Bowel Syndrome (IBS) or attributed to food allergies or symptom somatization. Regardless of what we choose to call it, it must be understood that the pain and discomfort arises from emotions being made physical – a prime example of the mind/body connection.
Cerebral atrophy — or what’s known as “starved brain” — is a common complication of anorexia nervosa and describes a loss of brain mass due to starvation. When a person does not get adequate nutrition regularly, starved brain will affect concentration, memory, cognitive flexibility, and fear responses, regardless of brain size.
Many of our patients at the ACUTE Center for Eating Disorders — even while being high-functioning — realize about a week into nutritional rehabilitation that they do have some type of so-called brain fog. They realize their concentration was compromised, that they were driven by rigid rules and fears rather than having the ability to be spontaneous, creative, and flexible, and that their memory was worsened.
We all know how hard it can be for a patient with an eating disorder to find the motivation to enter and stick with treatment. (Because I work in a hospital setting, I use the word “patient” rather than client.) Whether you suffer from an eating disorder yourself, are a loved one of someone who has one, or are a clinician, it’s clear that sustaining motivation is one of the greatest challenges.
So many of my patients—brilliant and articulate and sensitive and driven—hear a constant message from their eating disorder that they are “fine” (Aren’t they getting great grades? The star employee? Still able to complete their run?) and in fact should probably restrict more, purge more, go further.
It’s an exhausting and deafening message, and it’s incredibly hard to overcome. Since self-esteem often runs low at the same time, encouragement to “get treatment because you deserve something better” may not be motivating enough.
You may be someone with an eating disorder, a parent/partner/sibling/teacher/coach/grandparent of someone who has an eating disorder, or a clinician. You are all welcome to read on…everyone who has anything to do with eating disorders should understand why bone density loss and underweight are linked. I want you to understand the basic science behind the linkage, to grasp what’s at stake, and to use this scary example of objective body suffering to break through the syndrome of “I’m fine.”
So let’s start with some basics. During adolescence, 90% of your bone density is laid down…that’s the healthy, strong, resilient bone that has to carry you around the rest of your life, so it’s incredibly important. After age 20, the window to lay down this dense bone closes, and you will live in a balance of building up and breaking down bone until (if you’re a woman) menopause, at which point you’ll probably slowly start losing more bone density than you make because you no longer produce estrogen.