No More Shame: Speaking up about my eating disorder

My name is Meghan and I am an anorexic in recovery. There it is, in print, for all to see.

I feel ashamed to admit that I have suffered from an eating disorder for the past 21 years. Yes, ashamed and embarrassed. To be honest, I feel ashamed about feeling ashamed, that is how much this disease messes with your head. After all, I am currently healthy and relatively happy in my own skin and have been for over 4 years. I have knocked on death’s door twice in the same amount of decades and overcome this affliction both times. I should be proud, right? Wrong.

This disease, at least for me, has always been saturated with shame, guilt, and inadequacy.

While in the thick of it, it is so painfully private and all-encompassing, that it has driven me to lie, steal, isolate from those I love, and act erratically and selfishly. During healthy times, I feel ashamed of my past actions: the damage I have done to my body, the pain and suffering that I have put my family through, and the example I have set for my children. I am generally an honest person, sometimes to a fault, but I lie about this, unable to reconcile the disgrace and discomfiture associated with not only the label anorexia but also with my behavior. Not anymore. It’s time to speak up, because if even one person reading this finds solace, seeks help, better understands a loved one, or has a change in mindset, my shame is a small price to pay.

I am a control freak. I find peace in lists (and sublists!), spreadsheets, planners and a perfectly balanced checkbook. They bring me joy and comfort.

In a life full of chaos and unpredictability (kids, amiright?), having these items in my control makes me feel safe.

My eating disorder has served a similar role. Like so many, I have endured tough experiences that made me feel overwhelmed like life was spinning out of control. Paralyzed by feelings and circumstances out of my control, I sought control elsewhere. I poured myself into my schoolwork, worked tirelessly to keep my appearance and belongings “just so,” and planned and took a full inventory of calories in and out of my body. To the onlooker or parent, this does not appear to be a problem. I was an “A” student, with good hygiene, a clean room and seemingly healthy, albeit ritualized eating habits. Sounds like a dream, not a nightmare.

The problem became evident slowly. As my weight dropped I stopped hanging out with friends, and my eating restrictions and rules grew in intensity so that my eating was seldom and done only in private.

Somewhere along the way, fueled by distorted body image, low body weight, and continuing to feel out of control, I lost the little control I had and succumbed to the eating disorder.

Similar to addiction, once in the clutches of an eating disorder, one will stop at nothing to achieve one’s goal, which in my case was all about the numbers; calories in, calories out and the number on the scale. In addition, when one’s body weight dips below 85% of ideal body weight, there is a marked reduction in cognitive function, contributing to an underweight person’s inability to rationally assess the situation. I tried various adjuncts to calorie restriction to help decrease my weight including diet pills, laxatives and over exercising. My whole life revolved around keeping my calorie intake below a certain number, which decreased in time with my body weight.

By the time I was hospitalized, I was subsisting on 100 calories a day or less, and my weight was abysmal. I was dehydrated, anemic, electrolyte deficient, hypotensive, and had so much muscle wasting, that my heart actually began to shrink, causing a slowing of the electrical conduction, an irreversible condition in my case. I endured countless tests, nasogastric feeding tubes, and a treacherous re-feeding process.

Many people don’t realize that once someone with an eating disorder begins eating again, the number of calories consumed has to be limited and increased very slowly to avoid re-feeding syndrome, which can lead to serious complications including heart failure, respiratory failure, and even death. The process was slow and a bit torturous, and in total I was away from friends and family for 6 months, hospitalized and then in an eating disorder program. After returning home, I had to significantly reduce my activities and stressors, and my doctor did not approve of me starting a part time job for another 6 months. Luckily at that time, having just graduated from college, my responsibilities were minimal.

I did well in my recovery, with some minor bumps, but then it happened.

I relapsed.

Fast forward ten years, and once again I was in the throes of anorexia but this time, I was married with a full-time job, carrying our health insurance, and with two young children, ages 6 and 7. It was a slow downhill slide, and I got help sooner with the help of my loving partner, but still ended up hospitalized for a week and then in MA in a residential eating disorder program for 7.5 weeks. The timing was horrible. Not only did I miss the day-to-day life of my kids for 7.5 weeks, but this all happened around Thanksgiving, so I was away, in residential treatment through Christmas and New Years. Though I saw them weekly and talked to them every night, it wasn’t enough. I was heartbroken, and worst of all so were they. They didn’t really know what was going on, other than I was “sick” and obviously thin.

Still today, at 11 and 10, they don’t know the real reason why I was away, but they still talk about it, about how hard it was, and my heart shreds at every mention; my penance perhaps.

Or maybe their memory is my motivation to never get to that point again.

These days I am healthy, with no sign of relapse, though I have learned not to get cocky.

Now my fears turn to my daughter.

At 10, she has started middle school and I have heard her say things that have stopped me in my tracks. She talks about her “fat pants,” and how girls at school are dieting. I even saw her excited at the doctor’s office when they expressed concern that she had lost weight: “I lost weight? Yipee.” I have preached healthy eating, exercising, and positive body image since the day she was born. I have stressed moderation, discouraged any sort of dieting (at least in words) and commenting on anyone’s body or appearance is off limits in our house. But I cannot help but dwell on the adage “Do as I say, not as I do.” Though I never spoke about diets or called myself “fat,” she watched me slowly waste away. She saw me pick at my food and eat next to nothing at the family table.

How much impact do my words have if my actions have been in direct opposition?

I know the answer is some degree of age-appropriate transparency, some owning up, some “I know this is a bad idea because I did it.” I am waiting for the right time… perhaps that time is now.

So why now? Why am I sharing my story, why am I letting go of shame and contemplating coming clean with my children and the world now?

This past week was National Eating Disorder Awareness Week.

The National Eating Disorder Association (NEDA) is promoting free, 3-minute screenings, leading to early identification and treatment of eating disorders. This resource is available to anyone suffering- directly, or indirectly, as loved ones and care providers.

Another part of their mission is increasing awareness about the signs, prevalence, and severity of eating disorders as well as resources available, because nearly everyone knows someone suffering directly or indirectly from an eating disorder, whether they are aware of it or not.

Over 20 million women and 10 million men, in the US alone, will suffer from eating disorders in their lifetime.

These include anorexia nervosa, bulimia nervosa, binge eating disorder, and other specified feeding or eating disorders (OSFED). Those who suffer from anorexia will be at risk for low blood pressure, heart arrhythmias, muscle loss and weakness, kidney damage and osteoporosis, while those who suffer from bulimia or binge eating will be at risk for electrolyte imbalances, ulcers, poor dentition, esophageal disease and many diagnosis associated with obesity, including high blood pressure, high cholesterol and type II diabetes. Of the 30 million suffering, 4-5% will die as a direct result of their disordered eating.

Eating disorders carry the highest mortality rate of any psychiatric disorder, higher than depression, higher than addiction, but with much less awareness and assistance.

I point this out not to take away from these diagnoses, but for perspective. The national prevalence of eating disorders is 6 times greater than Alzheimer’s and over 7 times greater than Autism, but with 16 and 6 times less funding, respectively. This lack of funding and awareness prevents appropriate treatment as well as further research, which may lead to increased funding. A vicious cycle. Most insurance companies will not pay for eating disorder treatment or contribute so little that services are inaccessible, except to those who can write a check for tens or even hundreds of thousands of dollars.

These prevalence statistics are modest as they are based on known cases, and so many go undiagnosed, unseen, and unknown because of cost, stigma, and personal shame. It’s time to let go of the shame.

Let’s spread awareness, raise money, decrease social stigma, demand treatment and save lives.

If you are suffering, know someone suffering, or are concerned that you or someone you love may be struggling with an eating disorder go to NEDA’s website, take the online confidential screening, call the helpline, or chat online.

Get screened. Get help. Get healthy. #nomoreshame #NEDAwareness