Wednesday, September 24, 2014

A Disease of Self Hatred

 

Retreat. 2013 by Joslyn Smith

Retreat. 2013 by Joslyn Smith

On Wednesday, June 19, 2013, the American Medical Association (AMA) announced that its House of Delegates (against the recommendation of AMA’s own expert committee tasked with studying the issue) “voted to recognize obesity as a disease state with multiple aspects requiring a range of interventions to advance obesity treatment and prevention.”  Several excellent responses to the AMA announcement – especially from those advocating for a Health At Every Size® approach to wellness – have issued putting forth most of the points I feel are important to raise.  Rather than add to that very effective chorus and fuel the fire that is already burning wildly in my belly about this, I will share my story of three specific interactions, spanning the course of fifteen years, that have profoundly affected my health and, more importantly (and completely intertwined with my health), my sense of self.

[Having read this piece after writing it, it seems a little cynical compared to what I usually write.  I’ve decided to leave it as it is, without much editing, because cynicism in this instance is a way to protect myself for the time being against some incredibly painful emotions around what I am about to write.]

In late 1993 or early 1994, at 15 and not too shy of the size I am now at 34, I was smack dab in the middle of the worst year of my life to date.  In the middle of a whole lot of chaos, my neck started bothering me.  And by bothering me, I mean there was a huge, painful, bone-like knot, protruding from what seemed to me to be my spine, making it almost impossible for me to turn my head.

After a day or two of no improvement, my mom took me to the doctor.  My regular doctor was out of town so she got me in with Dr. X, a physician I had not seen before but who was able to see me quickly.  With no more of an examination than feeling different parts of my neck, the doctor informed me that I was developing a “buffalo hump” caused by carrying too much weight; there was nothing more than that wrong with me.  (Let me add here that there definitely was something wrong with my neck, and it had nothing to do with my weight.)

The appointment with Dr. X culminated in my first doctor-prescribed diet (I had been dieting for at least 5 years on my own by this point).  Looking back, I can see that the diet was, from any reasonable person’s perspective, a lesson plan in eating disordered behavior.  Without going into specifics, let me explain it this way:  I began each week consuming zero calories the first day.  Beginning on the second day, my caloric intake would gradually increase throughout the week (never to a level that was actually high enough to sustain me physically).  Then, on the last day of each week, I could eat or drink absolutely anything I wished.  The following day, the weekly cycle would begin again.

I saw Dr. X twice: the visit I just shared and an appointment one month later to check the progress of my weight loss.  To this day, I know exactly how much weight I lost that month.  I wish I could erase that number from my head, because it was (and is) unimportant and temporary.  What I gained that day was permanent: I gained information about how to deny my body any kind of sustenance or nurturance, and a very clear understanding that, no matter what is going on with my body or what might actually be the culprit of any discomfort or illness I have, it is my fault.  My body is simply too big.

Fast forward five years to 1999.  I had finally put the lessons from Dr. X to good use and was “becoming healthy”.  At that point, I was in college in southern California and believed that becoming healthy meant losing weight.  I had, in retrospect, been struggling with my eating disorder for several months.  However, I remained completely in denial, even though my therapist was beginning to voice some concern.  Increasingly, I was feeling sick.  Utilizing the campus health center, I began seeing a nurse practitioner.  I’ll call her Nurse Practitioner Y.

She listened to my complaints of achiness, fatigue, etc. and began testing me for several auto immune disorders.  When all of the test results came back negative, she began explaining to me the health consequences of obesity.  I remember like it was yesterday when she photocopied a height and weight chart for me, circling a weight that she thought was reasonable for me to reach.  One main problem (although there are many) with this appointment was that Nurse Practitioner Y took absolutely no weight, weight loss, weight gain, or food intake history.  At that time, I had already rapidly lost a significant amount of weight.

She did not know this, though, because she did not ask.  I was “obese” and, therefore, needed to lose weight.  She gave me recommendations of what a “healthy” diet would be, clearly assuming, incorrectly, that I was currently eating a greater quantity and less nutritiously than she suggested.  Nurse Practitioner Y recommended that I return to see her weekly so she could monitor my weight loss progress.  I, however, knew that my weight loss had leveled off – I was no longer losing at the rate I once was, even though my behaviors had not changed.

Now knowing that I would be tested regularly by the scale, I knew I had to do something to force more weight to come off.  That day was the first day I purged.  And Nurse Practitioner Y consistently gave me congratulatory reports each week as I, she again assumed, followed her diet recommendations so strictly.  This routine continued until one of my best friends insisted on going to the clinic with me so that I could tell Nurse Practitioner Y what I was actually doing with food and exercise.  Nurse Practitioner Y then quickly became one of my strongest supporters and advocates for getting the help I needed.  (I add this because she truly was a great health care professional, with great intentions.  But, by making assumptions about my health and food/exercise behaviors based on my weight, she did damage.)

However, around that time we learned that I had developed a cardiac arrhythmia.  My weight became much less of an issue once my heart was showing signs of damage.  Over the course of these initial eleven or so months of my eating disorder, from the time it developed until I reached the weight at which I was first hospitalized, I again know exactly how much weight I lost.  I also know what percentage of my body weight I lost.

Neither the weight nor the percentage of size lost was permanent.  Thankfully, my body got much more efficient at holding onto fat.  But I did lose things permanently during that time:  For example, I have little to no memory of most of 1999 and 2000.  And I gained:  tons of regret for the things I wish I had had energy to do differently in college; long term concerns for my health (again, that have nothing to do with my weight); and layers of self-criticism that still overwhelm me on certain days.

Ten years later, in 2009, I was doing important, well respected work in the eating disorders field in Washington, D.C.  I was seeing a dietitian weekly, because I had been struggling with nourishing myself well again (I guess I was seriously struggling with feeding myself, but the denial had crept up on me again).  And I was recognizing ways I could improve caring for myself in general.  I had not gone to the doctor in several years and knew I needed to have a physical, etc.  Because I knew how much I dreaded seeing any physician and having the inevitable weight discussion, my dietitian did a lot of wonderful outreach to health care providers she knew to find out who might be the best, most weight neutral physician for me to see.

She identified a female doctor, referred to here as Dr. Z, and I scheduled an appointment.  I did a very good job of advocating for myself.  I immediately disclosed my eating disorder history, my cardiac history (including that my chest had been hurting a little lately), and my insistence that any health care provider I work with focus on my health, separate from my weight.  Dr. Z listened, took some notes on her laptop, told me she completely understood my desire to focus on my health instead of my weight, and then proceeded to drop the big, nonchalant “but”…  But, probably my weight would drop some if I was eating less (she was determined that the caloric level the dietitian had me on was too high) and started exercising 20 minutes, three days a week on an elliptical.

I am honestly convinced that she did not believe (even with prior hospitalizations for an eating disorder) that I struggled to eat enough and that I was walking miles every day.  I left feeling defeated and believed that if I just exercised more I could lose weight and go to the doctor – just once – without my weight being the focus of an appointment.  Thankfully, within a week or so after that appointment, it became clear to the (other) health professionals on my treatment team that I needed to enter treatment again from my eating disorder.

My second appointment with Dr. Z’s office was to have the required tests run for admittance to the eating disorder program.  One of the tests required was, again, an EKG.  By this time, I had developed bradycardia.  Because of that, when I went into treatment, I was put on one hundred percent exercise restriction to give my heart time to heal.  Twenty minutes on the elliptical could have been twenty minutes too many.

My appointment with Dr. Z was four and a half years ago.  Since then, I have learned an immense amount about my body and about my nutritional needs, thanks to the eating disorder program I attended soon after her elliptical recommendation.  The past fourteen years of struggling with an eating disorder that has come frighteningly close to taking my life more than once have taught me much.  They have taught me that there are health care providers who understand the mechanisms of bodies and metabolism – my metabolism – and do not subscribe to the idea that my body is diseased because it is large.  They have taught me that when one finds those health care providers, they are not to be taken for granted, because they are few and far between (which is the main reason I left my job in D.C. and moved to upstate New York).  And most of all, they have taught me that the most important thing I can do to take care of my health is to know my body and to speak my truth.

I know that this post has been a little disjointed.  Frankly, I feel a little disjointed about a lot of things going on in the world – and specifically within organizations like the AMA – related to health and weight.  So, let me try to end succinctly with a few words directly addressed toward the AMA:

Dear AMA:

You look at me and recommend that my body be labeled diseased.  To you I say:  My body has a history and a complexity that is more beautiful and dignified than any word in any language.  My body is mine, mine alone, and it is sacred.  My body is not diseased.  Yet, I do fight to overcome a disease.  A disease IN my body, not OF my body.  A disease that I share with many.  A disease that deserves to be labeled and fought hard against: A disease of self hatred, self criticism, self surveillance.  A disease of  internalized beliefs based on outsiders’ gazes.  A disease of ‘What else is wrong with me?’; ‘I’ll never be enough’; ‘I’ll always be too much’.  A disease: MY BODY IS WRONG.  This is the disease I and so many others fight.  My cure will be to speak my truth, my body’s truth.  My body is mine and holds a beauty and a complexity and a health that can never be diagnosed from the outside.  And you are not invited to name it.

 

Comments

15 Responses to “A Disease of Self Hatred”
  1. This is a candid and beautifully shared account of why I am a health provider that treats people who struggle with eating disorders.

    Every health provider/enthusiast should wall paper this over the BMI charts and pin up inspiration boards that try to encourage health. This IS the real deal.

  2. Thank you for this, Joslyn! It is well expressed, authentic and much needed! I continue to learn through your life.

  3. Hello Joslyn. Thank you so much for sharing this story with all of us.
    I hope my opinion is well-stated (my mother tongue is Spanish so, please forgive me if any of my words seem rude).

    I believe that the problem is not just AMA and their labelling obesity as a disease. I believe that even before that, people have made preconceptions (both doctors and mortals) about people and their weight. It just amazes me how nurse Y never asked you about your history on food dieting, etc. And again, they just see *and think* that your weight is what is wrong, and do not focus on other things, like either your hormones, or, in your case, your heart.

    Sending you lots of good wishes, and most importantly, I truly hope you are doing better now.

  4. Lisa in Boston says:

    Joslyn, what a beautiful writer you are! I am overwhelmed by your story, and by how sadly familiar it is. I’ve had similar experiences myself, and I have heard so many women describe these experiences as well. Thank you for standing up for your body!

  5. Samantha says:

    Joslyn, thank you so much for your voice and speaking such beautiful truth and transparency to advocate for so many. Your work is making a difference and helps me, for one, and many others as well. Thank you.

  6. Becky says:

    Thank you for this.

  7. AnneMarie says:

    Crying…..

    My sister suffered terribly with an eating disorder in the mid 1970′s. And now, my beautiful 20 something daughter has been struggling for 12 years. In and out of treatment…..

    Yes, I’m crying.

    This bill was on the floor of the senate, introduced by then Senator Hillary Clinton. ANYWHERE obesity was mentioned, eating disorders also had to be included. I don’t think it was ever signed into law but it certainly should be…

    http://www.apa.org/monitor/sep05/obesity.aspx

    I send you love for being so brave and sharing your struggles….

  8. Erika says:

    You are so brave for sharing your experience. This NEEDED to be written. I think the entire letter and story needs to be shared with every doctor in the nation. I hope the AMA listens. Thanks again.

  9. Nani says:

    Thank you for this. Your words are as beautiful as your strength, your tenacity, your generosity, your humanity, your dignity, and your compassion. For me, you are the definition of art at its most raw and profound state. By writing this article, you are serving as a powerful example, an ideal. Thank you for not going with the status quo; for taking the time to educate the public; for motivating and inspiring others to action and to take a stand, and doing so in a peaceful, caring and honest way. Your words remind me of the moving quote: “Be the change you wish to see in the world.” More people like you is certainly what I wish to see in this world.

  10. Laurel Dean says:

    Thank you, Josyln, for this honest thought-provoking account of your life. I, too, have struggled with an eating disorder. In high school I was 5’5″ and weighed 84 pounds. I had a best friend who often said we were both fat! Conversely, other people were envious because I was so skinny. I was weak and depressed. Now I am very overweight. Some people make negative comments about my appearance. I am very hard on myself about my weight. Health care professionals had told me that if I lose weight I might not develop diabetes. I could not lose weight and developed Type II diabetes. When I went to a diabetes education class, I was surprised to discover there were many thin people there who had Type II diabetes. I also feel it is my fault that I have knee osteoarthritis. My dr. told me it is genetic, but I have heard over and over again it is exacerbated by excess weight. If people were more loving and accepting of other people’s bodies and refrained from critizing them I think there would be fewer eating disorders and less self-hatred.

  11. Kate says:

    I just wanted to say that I related to and loved this post, and especially ADORE that artwork. Love, love, love. Shared this on my facebook page.

  12. Alice says:

    Thank you for writing this. We as a society have become obsessed with outward appearance. We forget that every body is different, unique and beautiful. There was a time when a full figured woman was the height of beauty as food was hard to obtain. Now we cherish the super thin as that is the most difficult body to achieve and for a reason, we were’t designed that way at least not all of us.

    I had (still fight) an eating disorder for the last 29 years. I was already tiny when it started and it only let go when I got angry in response to my daughters ED. Let me add that as I have ulcerative colitis and never once mentioned body disatisfacion and that the ED came as a shock when I finally told my family after my daughter became ill. The ED almost killed her. It was 24/7 monitoring for over 2 years in and out of hospital where I slept in chairs at her bedside. Heart monitors, feeding tubes, vomit in my shoes when the illness took over and she lost control. She survived after residential treatment in the states and an amazing amount of courage and strength on her part. She now suffers with severe bone loss extreme joint pain and most likely will never have a child of her own and for someone so loving that is one hell of a loss. What did the world see as this illness ate my child from the inside????? A beautiful thin waif that was the envy of others. Now that’s truly the disease.

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