Suzanne: Thoughts on Life, Death, and Eating Disorders

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I remember hearing about my mom’s cousin, Suzanne, occasionally while I was growing up. In the late 1970s or early 1980s, Suzanne had developed anorexia, at which time very little was understood about the disease. According to family members, the rest of Suzanne’s life was a “waste.” She went from hospital to hospital, getting tubes in her nose and would immediately relapse upon discharge. There was a definite value judgment in how I was told about her life. I got the sense that others perceived her as lazy and selfish. That she had been married and had a daughter, and she ruined it all. My grandma would shake her head sympathetically every time Suzanne’s name was mentioned, “It’s such a shame.”

Hearing about this as a child, I was confused why Suzanne wouldn’t just eat. I was told that there was a point you reach when you can’t get better from anorexia, that her body had shut down, and she would be sick forever. She was in her early 60s but looked at least 2 decades older.  Her bones were so weak from osteoporosis that she had difficulty walking, and she spent her life going in and out of hospitals, seeking treatment for more and more anorexia-related health conditions.  She and her 80-year-old mother, who looked like twins, were content being homebound, or so it appeared.

My family’s reaction to Suzanne was a precursor of how my family would view my own illness. After seeing for myself how my relatives would give me a disgusted once-over and say insensitive comments at family gatherings such as, “Let’s all stand around and watch Charlotte eat birthday cake,” I had a new found sense of connection and camaraderie with Suzanne. I feel like our souls connected on some level, and although we never acknowledged it, we both knew that we knew.

I always wanted to talk to her about her journey through anorexia at a time when eating disorder treatment hadn’t even developed. I wanted to hear about what led to her eating disorder, how all of those hospitalizations changed her, and what her life was like in the aftermath of the onset of the disorder. Suzanne was never open about her personal life when we saw each other. It seemed like she was a skeleton in a human body, her heart beating, but barely.  I never saw her animated or giggle or laugh or cry.  I don’t know whether she ate or drank.  I never saw her do either.  She seemed in a trance much of the time, like she wasn’t all there. I recognized that vacant look of absence of life. I had seen it before in people I knew. I had seen it in myself.

After leaving treatment in 2010, I sent her an email saying I would love to meet with her to talk about our shared experience, but I never heard back from her about that. I felt like I had something I wanted to say to her. Unfortunately, I never got the chance. In May of 2013, Suzanne died due to complications of anorexia. None of my family members bothered to tell me that she died until after the funeral.

Even though I never knew Suzanne well, I was devastated by her death. I felt like we shared a bond that traversed small talk at family gatherings. Underneath her emaciated body, I could also tell that she had an exquisite soul that was beautiful, complex, and rich. I saw the commonalities between us. We bore our pain in similar ways.

Marya Hornbacher wrote the following in her book Wasted: “You never come back, not all the way. Always, there is an odd distance between you and the people you love and the people you meet, a barrier thin as the glass of a mirror. You never come all the way out of the mirror; you stand, for the rest of your life, with one foot in this world and one in another, where everything is upside down and backward and sad.”

I don’t believe that about everyone.  A lot of people do come all the way back.  I have seen it happen.  I have seen people who I thought I would attend their funerals, and now they’re full of life, enriched, and better, completely better. People can get beyond the living hell of an eating disorder and go on to live fulfilling lives. The eating disorder voice can be silenced or muted.

However, the reality is that some people don’t come all the way back.  Suzanne never came back. That is a tragedy.

Unlike my family members, I don’t think Suzanne was lazy or wasteful.  I saw her like I see myself— having issues that are partially based on cultural, personality, and biological factors.  I see that she developed an eating disorder at the wrong time, when anorexia was not a household name and before treatment addressed eating disorders.  I see her succumbing to the seductive lure of anorexia and becoming entrenched in a lifestyle of size, restriction, and weight loss. I know, all too well, that seductive lure. I know all too well that anorexia is like a rabbit hole, and once you go in, it’s so hard to come out. And even if you do, you are forever changed.

I mourn the fact that I could never connect with Suzanne before her death. I wish I could have told her that I understand. I understand the hunger for death and starvation so much that it trumps all else. I understand and feel the deep pain that is inside of her because it is inside of me as well. I wish I could have told her that there was hope, that recovery is possible. It is not easy, but it is possible.

I would have plead with her, eaten a meal with her, or tried to avert the lost glaze in her eyes. I wish I could have told her that I loved her, and more than that, God loved her and was grieving with her. God grieved that his beautiful daughter lived her life from hospital to hospital, crippled with osteoporosis and plagued with heart difficulties. God grieved that her life was so difficult and hated the anorexia for depriving the world of his precious child prematurely.

At a family gathering a few months ago, I had the opportunity to speak with Suzanne’s brother. I told him how much his sister’s life and death meant to me, that this is what compels me to keep going. She is a causality of an unfair and cruel illness that took her away. In life, Suzanne was silenced, but her voice cannot be silenced forever because she had something important to say.

It is a fine line between death and life. If I had been born 40 years earlier, I could have faced the same fate. Eating disorders are complex, but they are treatable. I have been privileged to receive the help that I have needed, but others do not have that same luxury. The world is being deprived of the light these people have to give to others and the world. I cannot stand by and let these diseases devastate innocent victims without doing everything I can to combat it.

It gives me great comfort that Suzanne is with Jesus right now, and he is wiping away her tears, telling her that it is all over, that it is okay, she is safe now, forever.  She doesn’t have to suffer anymore.  I wonder if I will ever be able to have a conversation with her in heaven. I wonder if we’ll be able to cry together over the anguish of sin and culture and biology and death, with our robes white, washed clean by the blood of the lamb.  When we meet again, everything will be redeemed and made new. Eating disorders will be relinquished of their power, and we will be whole.

I wonder what we will talk about if I see her again someday. I wonder what I will have to tell her because I don’t know how my story will end.

The Infamous “5 Reasons to Date a Girl with an Eating Disorder” Article

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I have been toying with whether or not to write this post, not because I have a dearth of opinions on this article, but because it is so repulsive that frankly, I don’t think their web site deserves any more site traffic. However, the fact that there are people out there that write and believe this haunts me. I feel as if I cannot let these claims go. So here goes an extremely pissed off reaction to this despicable article.

My first thoughts on reading the title, “5 Reasons to Date a Girl with an Eating Disorder,” was, “This has to be a joke,” and then, after reading the full thing, “Low, dude, low.” My gut reaction was hardly one of empathy. I wanted to strangle the shit of out this person and sentence him to a life sentence of life in an eating disorder treatment center, and honestly, I’m still struggling with those urges (I’m joking… about the strangling part. Not the treatment center part. He totally deserves that).

He had me disgusted at the picture of the girl throwing up in the toilet on the top of the article. Or maybe with the tag line, “Nothing screams white-girl problems louder than a good old-fashioned eating disorder” (proceeding to say that for the article, he would exclude certain eating disorders and that he was not counting “fatties without self-control”).

But like a train wreck, or like a reunion show of The Real Housewives, he kept going. According to the writer, a girl with an eating disorder is advantageous as a partner because her obsession with her body will improve her overall looks, she costs less money, she is fragile and vulnerable, she probably has money of her own, and she’s better in bed. Part of me doesn’t even want to respond to the absurdity of what he is saying. He is speaking out of misogyny, overt sexism, elitism, privilege, and a phobia/ fear of fat. His article demonstrates the objectification and violation of a vulnerable population and condones abusive behavior. I could also go on and on about how people with eating disorders are not all rich, nor do they look like they have an eating disorder (whatever that means), nor are they necessarily white, nor are they necessarily female, nor are they necessarily homosexual. Nor will I dispute his blatantly ridiculous claims such as, “It’s a well-known fact that crazy girls are exceptional in the sack.”

I will look at it from a more personal lens. As a survivor of anorexia, I am absolutely repulsed and insulted by pretty much every word of this. First of all, the very premise of the article is offensive to me. People with eating disorders shouldn’t be objectified as “today’s best-buy in the West’s rapidly plummeting dating market.” I think people with eating disorders are pretty awesome people, and I think a guy would be lucky to date one of us, but we are not just sitting with our Melba Toast waiting for some asshole “Prince” to take us out to dinner so we can order salad. I don’t know what fucked up planet this guy is on on which he thinks that these things are options for him and anyone else.

Clearly this author has no idea what an eating disorder really is, and if he does and is writing these things, he needs empathy classes. Or, as suggested earlier, a sentence to a diet of Ensure and group therapy in residential treatment.

An eating disorder means spending your life with one foot in this world and one in the dead. An eating disorder means going to sleep not knowing if your heart will keep beating into the morning. As for the whole she spends less money thing? An eating disorder often means getting in debt because you spend so much money on binge food. And 4 coffees and sugar free jello and all organic food and tons of fruits and vegetables? Also expensive. An eating disorder means selling your soul. There is nothing sexy about that. Eating disorders are tragic.

The author says that an eating disorder is only good if it “hasn’t excessively marred her appearance.” Well, guess what, when you’re in the thrust of an eating disorder, you don’t care about your appearance. Your hair is falling out? Your stomach doesn’t function? You have hair on your skin? Your cheeks are bloated? Whatever. When you are at that point, at the point of no return, nothing matters anymore. And if it doesn’t matter, you still can’t stop. You can no longer remember why you are doing this all in the first place. It’s not like you can choose for your eating disorder to control you until a certain point, until you start getting “ugly”. It doesn’t work like that. I’ve often heard that the best anorexic is dead. That’s where eating disorders stop. The grave.

As one comment on the original post said, if someone was to write an article, “5 Reasons to Date Someone with Cancer,” and have those be the reasons, that would be seen as absolutely vile, disgusting, and be taken down. What this person doesn’t understand is that eating disorders are DISORDERS. It can take over your life. It can consume you. And, it can kill you. Even if this author was joking, to joke about this subject is not funny. It is insensitive and offensive.

To the men in the world, I don’t want you to date me or anyone else because I am “fragile or vulnerable,” because I have “daddy issues,” or because I’ll spend less of your money at a restaurant. I want you to date me because I’m me. I want you to date me regardless of any issues I have had or have or will have. I want that for everyone else as well. I think of the little girls in the world and how disgusting it is that one of them would end up with some sexist asshole like this someday. It breaks my heart.

We all deserve more than this. I have been impressed by several articles that have been written against this article, including ones by the Huffington Post and NEDA. I have appreciated the public outcry over this article on social media. I agree with the Huffington Post, that this article shows us how completely vile the internet can be.

However, I think it goes deeper than this. The cultural obsession with thinness penetrates deeper than misogynist bloggers. It relates to an idea that was exemplified in this post, which is a girl’s reaction to someone who wanted “a little bit” of her eating disorder. Many people idealize the idea of an eating disorder, especially anorexia, as meeting the cultural ideal. Sometimes they don’t admit it so blatantly, but it is still a passing flicker in their minds. The Return of Kings article is extreme, but it begs us all to look at our cultural biases and where we might oppress others because of weight. Wanting to date someone with an eating disorder because she is fragile and good in bed is bad. BUT someone desiring to have “a little bit” of an eating disorder, or spending a lifetime trying to fit the elusive cultural idea, those things are bad too. More than that, all of it is heartbreaking.

Like the Huffington Post article says, the internet will continue being crazy, but the issue for us is how to react. I am writing to stand in solidarity with those whose voices are not being heard. I am writing in response to blatant lies and because to the deep of my core, I have been offended and disgusted.

We all deserve better than this. My friends deserve better than this. My future daughter deserves better than this. My cats deserve better than this. Pretty much everyone and everything in the entire world deserve better than this.

Is Recovery from Anorexia Possible?

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This post is a long time coming. Ever since I was diagnosed with anorexia nervosa (AN) 12 years ago, I have heard the word “recovery” thrown around a lot. People are constantly saying that they’re “in recovery” or “recovered” (or “recoverED”). But what even constitutes recovery?

When I was 13, my doctor told me a story about someone she knew with anorexia who was now in her 40s, and was in “recovery” after struggling with the illness for decades. Apparently this woman would carry cottage cheese around with her and eat it when she “didn’t like” what was being served at others’ homes. That was the model that was laid out to me of recovery. Years later, I still think about that story. Is that what recovery is supposed to be? Carrying around cottage cheese for the rest of your life? (Caveat: there is no offense meant for cottage cheese. I go through phases of liking cottage cheese, and it is a good source of protein. However, if my years of nutrition therapy have taught me one thing, I believe that cottage cheese lacks most major food groups and is not a substantial or “normal” meal in and of itself).

On the other hand, I hear incessant narratives and stories of people who are completely over their eating disorder. The narrative goes something like this: “I was in the darkest place. I was going to die. But I got better. Now I am now recovered. I want to help others do the same, and I will devote the rest of my life to posting inspirational pictures on Facebook and writing self-help books!”

Both of these extremes really annoy me. One the one hand, I don’t want to be told that my best outcome in life is becoming BFF’s with a jar of cottage cheese. Living without a sense of hope of recovery is just depressing. I remember one therapist told me that I would probably struggle with my issues for the rest of my life. Do you know how I reacted to that comment? I stopped seeing her. Why would you bother going to therapy if life is never going to get better eventually? I find great hope in little moments, glimpses of wellness. I find great hope and energy when people believe in me genuinely.

On the other hand, I have a deep capacity to feel and understand pain. The roots of eating disorders go so deep, and I don’t want to trivialize or reduce someone’s experience to the happily-ever-after “I am recovered, and you can be too!” I don’t think that is taking into consideration what a person is going through, and the shame that can accompany someone who is NOT recovered hearing bubble-gum, happy-go-lucky self-help messages all the time.

In thinking through the question of what recovery actually is, I have encountered different, and often contradictory, answers, as is explored in this article from the NY Times. There have been a handful of studies looking at recovery from anorexia, and all of them use different measures and ideas of what recovery is. Carrie Arnold has explored this often elusive concept of recovery on her blog and also in the book Decoding AnorexiaAnother article by Bardone-Cone et al. (2010) explores the idea of recovery from an eating disorder and concludes with the idea that definitions of recovery in research should include behavioral, psychological, and physical components. If researchers are unclear about what recovery is, and professionals given people contradictory messages about how well you can get, how are you even able to know when you’ve gotten there?

Some people are convinced that they are recovered from their eating disorder, never to relapse again, and I appreciate people who are authentically recovered. I had one therapist recently who would often talk about being recovered. It irritated me a little bit at first, but then I saw the way that she ate and lived her life, and I have no doubt in my mind that she is genuinely over her eating disorder 100%. That was healing to see a professional be so secure that her eating disorder was in her past; moreover, that she thought that I could get there as well. The reason why this therapist was helpful is not only that she is recovered but also because she didn’t cram it down my throat during every session, and she was able to meet me where I was without having this underlying self-help, fix-it-right now agenda. I see friends with whom I went to treatment going to school, having babies, getting married, and living their lives absent of their eating disorder. That is beautiful and redemptive to see.

At the same time, I am too familiar with what Aimee Liu calls the “half life” of anorexia, in which symptoms have been in remission but self-criticism, perfectionism, judgmentalism, and the restrictive mind-set persist. For people whose restrictive mind set has penetrated down to the core of their bones, or who perhaps have comorbid conditions, this “half life” might be someone’s dwelling place for a long time… if not forever. Full recovery from an eating disorder is a long process. Far after the symptoms subside, the underlying issues raise their ugly heads and must be dealt with. I am still dealing with those issues, and it doesn’t look like they’re going away anytime soon.

I resonate with what Suzanne Dooley-Hash says in the NY Times article, “I feel like I can’t ever be off guard,” she said. “The next time I’m overwhelmed and stressed, my first instinct is going to go back to restricting. I think I would be naïve to think it would ever not be a part of my life.” At this time of my life, I am always vigilant. Every cold, every flu, every stressful conversation, I must be cognizant of my eating patterns and making sure that I don’t slip. I don’t know if that amount of self-monitoring will be necessary forever, but for me, it is necessary for right now.

I hope that full healing is possible for me. I hope that someday, all psychological, behavioral, and physical symptoms of anorexia will be absent in my life. I hope that for others as well, and I have great hope in my faith and what I have seen happen to others in my life. Consequently, I am realistic and don’t want to belittle others or be condescending about what SHOULD happen. Eating disorder recovery is like a labyrinth, and usually there is not an easy way out. It takes a lot of support, a really, really good therapist, and love.

I love how Carrie Arnold starts the last chapter of Decoding Anorexia, “Usually in the last chapter of an eating disorder book, the heroine leaps off the page, recovered, and yammers on endlessly about how great her life is. She loves her body! and how she looks! and food is just this wonderful, delicious thing! and so on. This is not that book.” In keeping with her theme, this will not be that post. I am in a good place. I am so thankful to be where I am. Frankly, I’m happy to be alive. I’m thankful for Sour Patch Kids, macaroni and cheese, and my therapist. But I am not road-tripping across the country to tell people about how awesome and inspiring I am and how others can become like me. I still struggle in the “half life” stage of anorexia, better but not recovered. I want to be met where I am, not have my experience belittled, and receive hope and love that I need to move forward, albeit slowly.

Testimonies of the Not-Yet Healed

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My relationship with writing goes way back. I taught myself how to write before I learned how to read. From that time on, I have felt a chill in my bones: I must write what I see. I must write what I feel. Of course, I enjoy writing. But to me, it has felt like a mandate as well. My writing style has morphed between creative and academic writing throughout my life. It has also been nuanced to include my passion about mental illness and mental health issues, especially eating disorders. I write for myself, but I also write so that others will understand my experiences and more about the beautiful chaos of life.

While writing has always been a part of my life, I have been plagued with the contradictory but simultaneous message that I am not good enough for anything, much less to write. I am broken and scarred. I can’t pretend that my life is bubble gum and rainbows and butterflies. Many “eating disorder recovery” sites and books read like a travel brochure or ” a secret society with an even more secret handshake,” as Carrie Arnold astutely remarks in her blog. I feel that such positivity can be minimizing and shaming. Moreover, it leaves me with the sense that until I am fully better, fully recovered, and frankly, perfect, I don’t have anything to say.

I have faced this message in the church as well. I have heard testimonies of people who God has healed, people who have prayed to God and have received powerful miracles. I rejoice in the work God does in others’ lives, but it leaves me with the nagging sensation: Why has healing alluded me when I’ve prayed for it for so long? God, where are you in this? 

In telling people about my pain, I have encountered quite the range of responses. I have been blessed with many amazing people in my life who sit with, love, and accept me. Others have turned to advice-giving and trying to “fix” the problem. While I love psychology and the rationale behind what I do, and while I love theology, concentrating on “fixing” the problem rather than hearing me is missing the point. I am less concerned with the answers than the questions.

When I read this article, called “Testimonies of the Not-Yet Healed,” I was really blown away. As Marya Hornbacher wrote in Wasted, “still there are holes and you you are a rag doll, invented, imperfect.” I am not “whole and happy.” I am not healed completely, convinced that I will never never never NEVER relapse again. Despite that, perhaps I still have something to say.

Writing my thoughts requires being vulnerable and honest, and I hope to provide a space in which I can accomplish just that.