Size 9 With a Life-Threatening Eating Disorder

Nicole Johns suffered severe damage to her body, including exercise-induced asthma, irregular heartbeat, and hypotension, and had to be hospitalized to be treated... while a size 9.
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When most people think of those suffering from eating disorders, they picture those with emaciated bodies, starving or puking, barely hanging on to their lives. Nicole Johns suffered severe damage to her body, including exercise-induced asthma, irregular heartbeat, and hypotension, and had to be hospitalized to be treated...while a size 9. She eventually checked herself into an eating disorder treatment center and was diagnosed with EDNOS (Eating Disorder Not Otherwise Specified), which Johns calls "an island between anorexia and bulimia, a no-man's land that borrows from both diagnoses." She documents her stay there in her recent memoir Purge: Rehab Diaries (Seal Press), via journal entries, memoir, and documentation, the mostly harrowing, sometimes humorous time she spent in treatment, where certain books, food and sex toys were banned, therapy was mandated, and she slowly learned how to live without an eating disorder.

What I especially liked about Purge is that Johns never comes across like she's now seen the light and knows everything. There's evidence of her struggle on every page, and while at times the book can seem repetitive, that surely mimics what life in treatment was like for her. Her story is filled with many ups and downs, and even while in treatment, she was tempted, and sometimes did, revert to her habit of eating and purging. Now the author, who has been in recovery from her eating disorder since 2005 and currently works at a preschool in Minnesota, seeks to share her story to let other women and men know that you can't tell who has an eating disorder just by looking at them.

You chose to focus on your 88 days in treatment, with a little glimpse into your life prior to going into treatment and some of your history that's unveiled during treatment. Why did you focus on this time period? Did you check yourself into treatment?

I focused on the 88 days of treatment because it was a concrete chunk of time with a structured beginning and end, and I wanted to detail how I moved toward recovery, not how I spiraled into sickness. My life before treatment was so inhibited by my eating disorder that it wouldn't have made for very interesting reading. I was so focused on trying to lose weight, bingeing and purging, starving etc that I had practically excluded other activities from my life, such as going out with friends, dating, etc. I had whittled my life down to school and my eating disorder.

I voluntarily checked myself into treatment. I had reached my breaking point (physically and emotionally), and I knew there had to be a better way to live.

You include both positive and negative experiences with the counselors at the EDC, including one therapist who pushes you to relive your experience of sexual harassment. Where do you think the EDC could've improved in its treatment?

Overall, I think the treatment I received at the EDC was top-notch. However, there were a few places where there was room for improvement. The obvious one (to me) is how they dealt with sexuality when they thought I was possibly in a relationship with another patient. I think they didn't have much experience in dealing with anything other than heterosexuality.

I also thought some of the therapeutic activities we did were rather childish, and at times I felt like these activities insulted my intelligence.

There was also a tendency to really push psychiatric medication at the EDC, which is worrisome. I was the only patient not on a psych med during my time in treatment (I later went on one after treatment), and I saw a lot of prescribing things like antipsychotics for depression and insomnia, because that was what the pharmaceutical industry was pushing at the time. I found this rather disturbing.

You write that "...for a long time I refused to believe I had a problem because I wasn't underweight," and you write about outgrowing your size 9 jeans, yet you did substantial damage to your body and had to be hospitalized. Is this a common misconception?

This is one of the reasons I wrote Purge. I want both eating disorder sufferers as well as the general public to know that a person deserves help at any weight, and that a person is in danger of physical consequences including death at any weight if they are engaging in eating disorder activities. It is a myth that a person needs to be drastically underweight to need hospitalization. It's not all about the weight. I am a testament to that.

You write of Marya Hornbacher's memoir, "It is worth nothing that Wasted has a cult following of eating-disordered individuals. While I was in treatment, several women attempted to smuggle Wasted into the treatment facility, but the staff confiscated their dog-eared copies of the book. These women considered Wasted their eating disorder bible; they gleaned tips from it and used it to trigger their own eating disorder behaviors." Was this at all a concern for you in terms of describing the details of your eating disorder?

I was very concerned about this when writing about my eating disorder. I tried to stay away from giving "tips" about how to be eating disordered, and instead tried to focus on the consequences of eating disorder behaviors. I wanted to show my readers how harmful an eating disorder can be, but also that recovery and health are possible. I wanted to show the reality of living with and recovering from an eating disorder, but also wanted to give my readers hope and show them that there is a way out. This is also why I focused on writing about moving toward recovery rather than detailing how I became sick. Books like Wasted detail how their author's downward spiral into the eating disorder, but don't show the reader how they found their way out (or even that there is a way out).

You write that we are living in the age of the memoir, and in yours you include actual documentation of both your own medical history and treatment as well as rules from the EDC. Were these included to bolster the truth of your account or to paint a better portrait of life inside the EDC?

The documents serve a triple purpose; they serve as proof of my experience and they also illustrate what certain aspects of life were like in the EDC. In addition, they also helped me structure the book.

You inject humorous moments into your memoir, such as the residents questioning the vibrator policy at the EDC, and other little private jokes. Obviously it was a difficult and serious time, but do you have some fond memories? Were you able to see and enjoy these humorous moments while you were there?

I do have some fond memories, including the vibrator incident you mention, as well as other instances that occurred during down time in treatment. Part of treatment includes learning how to experience emotion and learn how to let go and have fun. I made several friends at the EDC, one of whom is going to be a bridesmaid in my wedding. One of the products of treatment, for me, was that I relearned how to let myself go and have fun, make friends and enjoy life.

Your bisexuality is treated as a given in the text, with mentions of girlfriends and boyfriends, and a passing mention that it's not an issue when presented to the staff and residents of the EDC. Do you see your sexual orientation as playing any role in your eating disorder and recovery?

I think I was ashamed of my sexuality when I was actively in my eating disorder. I was raised Catholic, in a tiny rural PA town that is quite socially conservative, and bisexuality was not accepted, so I carried a lot of guilt and shame about it, which of course fueled my eating disorder. In recovery, I have grown more comfortable in my sexuality, although it bears noting that I don't really define my sexuality. For me, it is about the person, not the gender. I love my fiancé because he is himself, not because he's a boy.

You write, "The classroom is one of the places where I feel most comfortable. It is a place where I can forget that I have an eating disorder." Why do you think you felt so comfortable there? Are you still teaching?

I think I like teaching so much because I love to learn and share my love of learning and knowledge of a subject with others. It is something I am passionate about. In a way, it makes me go outside myself. It's also something I am good at, and that I take pride in.

Technically, I am teaching, although I'm a preschool teacher, not a college instructor.

How does EDNOS differ from anorexia or bulimia?

EDNOS borrows from both diagnoses, and is the catch-all diagnosis for those who have an eating disorder but don't meet all the diagnostic criteria for anorexia or bulimia.

How did the actual book come about? How long did it take you to write it, and what was the most challenging part of writing it?

It started as journal entries in treatment, and then turned in to a few essays for grad school, then became my thesis project, and then it became a book. It took me about a year and a half to two years to write. There were several challenging parts to writing Purge. It was hard to realize how much pain I had been in, and how much I had suffered, and how much those close to me suffered. It was very hard to think of people other than me reading it. At first, I was scared to share it with the world, because I was afraid people would judge me (me personally, not the writing) and not believe me.

What advice would you give someone with a loved one they think or know has an eating disorder?

I would advise them to express their concerns in a non-threatening and non-judgmental way. I'd tell them to remind the loved one how much they love them, and that they care about them. I'd also tell them to present the loved one with some local resources, and offer to help them in any way possible. You want to remind the loved one that they are not alone, and that you are there for them.

At the end of the memoir, you are visiting the bedside of your friend Holly, who you were in the EDC with and who's now in the hospital hooked up to a feeding tube. What happened with her?

She survived, but was very ill (physically) for a long time. As I moved further into recovery, we drifted apart, and we are no longer in contact, although to the best of my knowledge she is doing well.

What's the number-one thing you'd like the general public to know about people with eating disorders?

It's not just about being thin.

What are you working on now?

To be honest, I haven't been writing. Between planning a wedding, publicizing Purge and working 40 hours a week, I just don't have the time to start a new project right now. I have several ideas, but I'm waiting for the right one to grab my attention.

You can read Nicole Johns' blog here. Purge: Rehab Diaries is available wherever books are sold.

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