About Anorexia Nervosa

“Anorexia nervosa is an eating disorder characterized by refusal to maintain a healthy body weight, and an obsessive fear of gaining weight due to a distorted self image which may be maintained by various cognitive biases that alter how the affected individual evaluates and thinks about their body, food and eating. It is a serious mental illness with a high incidence of comorbidity and also the highest mortality rate of any psychiatric disorder.

“While the stereotype is that AN affects young white women, it can affect men and women of all ages, races, socioeconomic and cultural backgrounds.”

–Wikipedia

I have had eating disorders for thirty years.  I started my first “diet” on July 1, 1980.  My first binge was on August 8, 1980.  The first date was recorded in my journal; the second, in memory only.  After I became anorexic in 1980, I developed Binge Eating Disorder, which didn’t have a name back then, and I was subsequently misdiagnosed with Bulimia.

I never realized what Anorexia was until I read Aimee Liu’s Solitaire, which I discovered in a bookstore in Vermont in 1980.  I saw myself in the pages of that book.  Years kater, I met Aimee Liu, and told her the story of how I found her book, and thanked her.

But it was the bingeing that made me miserable.  I was desperate to make it stop.  After individual therapy didn’t work, I tried a psychiatric day treatment program, and finally I was hospitalized, not in an eating disorders hospital–they didn’t have them in those days–but in a psychiatric unit.  It didn’t help.  Finally, giving up all hope that the bingeing would ever stop, I made an attempt to end my life.

My shocked and frustrated parents sent me to a work farm next.  It was horrible.  But one lucky thing happened.  The doctor there, who wasn’t really part of the farm, put me on lithium.  This is a drug that is a mood stabilizer given to people with bipolar disorder (manic depression).  After a short time of being on lithium, the bingeing stopped.  It was like a miracle.

Years later, my weight dropped again.  I don’t recall the details, and it was short-lived.  Soon after, a doctor insisted on putting me on an antidepressant, Nortryptyline.  The bingeing returned, and my weight went back up.  I don’t do well with antidepressants, I’ve found.  The bingeing continued over a period of years, but it was never as intense as before, so I managed to cope with it.  Later, I started the drug Risperdal, around the time that it was released onto the market.  Risperdal was the second of the “atypical” antipsychotics to come out.  The first was Clozaril.  Risperdal gave me some relief from bingeing.

In 1996 and 1997, my weight was dangerously low.  I was not, at the time, treated for my eating disorder at all.  In fact, I was given shock treatments!  I was administered shock until I couldn’t think straight.  The confused thinking was misdiagnosed for depression, so I was given even more shock treatments!  Finally, I didn’t go back.  I had had enough.  I wasn’t even eating enough to enable my brain to think clearly.  I was very, very ill.

My weight was very low over the next few years, but mentally, I made a dramatic turn.  I returned to school after 18 years.  I started a new life.

In 2000 I had a brief relapse mentally.  Part of this relapse is that the food restriction returned.  But this was short-lived.  I was started on the antipsychotic drug Seroquel.  Seroquel causes dramatic weight gain. It also caused me to binge.   Over four years, I gained 110 pounds!  During a six-month period, while taking 900 mgs Seroquel a day, I gained 50 pounds!  My self-esteem plummeted, as did my physical health.  I had to take nearly a year off of graduate school because I felt so depressed.  One of my knees finally gave out.  I was so heavy that I was unable to walk on crutches, and spent three months in a wheelchair.

On my insistance, my doctor took me off Seroquel, and gradually, I lost the weight.  But I was still bingeing.  Finally, we tried the drug Topamax, an anticonvulsant medication that is sometimes used for people with bipolar disorder.  It stopped the bingeing.  Like lithium, Topamax was like a miracle pill that also helped with depression.  I was able to return to graduate school at that time.

In March, 2008, I was raped.  I put all memory of the experience aside until August.  It was then that I began to remember, and I believe it was then that I began to forget meals.  I began to write little notes to myself to remind myself to eat.  I began to skimp on meals, and to limit the amount of money I spent on food.  In September, I moved to a different building.  This was a traumatic experience for me.  The neighbors were hostile.  They didn’t like Puzzle, and they didn’t like me.  I had no shades in my apartment, and therefore no privacy; people walked by in the hall at all times of day and night (this has since improved as they have limited access of one of the outer doors); I could hear the lady next door sneeze all day long; I could hear everyone’s TV blasting all day long; I had countless boxes to unpack, and all the while I was trying to get through school.  Gradually, I ate less and less.  The next semester came.  This was the final semester, when I was to revise my thesis.  I worked all day, into the night, every day, and I starved myself.  When I finally finished my thesis, I could barely walk to the Post Office to mail it in.  I came to graduation pale, weak, and starving, but I graduated.

After graduation, I tried to keep busy, and I fared rather well at it.  November came, and I participated in National Novel Writing Month.  I wrote all day long and into the night, every day, and starved myself.  Finally, my therapist and psychiatrist gave me an ultimatum: get treatment, or we will no longer treat you.  I went inpatient at an eating disorders hospital in January, and then again in March.  It did no good.  I lost all the weight that the hospital made me gain, and even more.

The day my manuscript was accepted, that very day, was one of my worst days.  I knew I needed help.  Some of my friends begged me to go to the emergency room, not to wait till Monday, that I might have a heart attack from starving myself, that I needed help.  Meanwhile, many were congratulating me.

I ate, but my heart was not in it.  I didn’t really want to be eating, but I had to eat, otherwise I’d end up back at the ED hospital.  A lot of the time, I just wanted to starve myself and let myself die.  After a short while, I couldn’t take it anymore, and began to starve myself again. I lost weight and hit a low point.

Perhaps August, 2010 was even worse, my darkest month.  My friends couldn’t take it anymore.  They could not watch me slowly kill myself, and we parted ways.  I had very few allies, and we wept together every day.  I knew that I would not live past the end of the year, that I would either starve to death or make sure I would die by some other means.  It was senseless to go on.  I made secret plans.  I was actually going to turn my back on Puzzle and everyone I knew and loved.

Then I met Frank.  And everything changed.

Frank is also anorexic.  Wow, could we relate!  We had so much to talk about!  He lives far away, but soon, we fell in love.  We have never seen each other in person, but someday, we will meet.  Suddenly, I didn’t want to die anymore.  We skyped a number of times a day, and we ate together!  Yes, we worked out this plan to live and thrive and be healthy.

When I wrote this page before I met Frank, I wrote:

“I don’t know what will happen to me.  I have had eating disorders for thirty years.   Will this ever go away?  If I had known, in 1980, that this ED would last 30 years…would I have wanted to live at all?  I guess it’s good that I didn’t know, because I have lived a worthwhile life.  Even now, there are times, though rare, that I forget that I have anorexia, and I live a little bit.”

But something happened in December, 2010.  My schizoaffective disorder came back, and the starvation returned.  Frank did what he could, but I ended up hospitalized (not for ED, but for the schizoaffective) in two different hospitals that winter.  By the end of the season, I only weighed 86 pounds.

I began to experience many medical complications from long-term starvation.  My ankles and legs swelled up.  All the systems of my body slowed down, including peristalsis.  This was so upsetting to me that I only starved myself more, and felt that my body had been ruined.  I began to experience vertigo every morning.  Eventually, starvation affected my vital signs.  At this point, I was in a state of severe malnutrition and dehydration.  I knew that I would die soon, and made preparations for what I thought would be the end of my life.  My psychiatrist and therapist ended up convincing me to head over to the emergency room, where I was immediately given IV fluids.  Had I not gone to the hospital when I did, I would have died that night.  My pulse was at a low 32 beats per minute while awake.  I can’t imagine what it was when I was asleep.

I spent 10 days on a medical floor and four days at a psychiatric unit.  I left, then after what was what I considered the worst binge streak of my life, came back, spent six days, and was released. I returned home, and my reckless behavior was even worse.  On September 1, 2011, I had a bingeing episode while sitting in the back seat of a public transit bus, right in front of other passengers.   Then, as I was disembarking the bus, I fell, hard, on the concrete pavement of the bus station.  That night, I checked myself into the emergency room, and the following day I was transported from the emergency room to the psychiatric unit at Walden Behavioral Care.

Walden has two wings: the eating disorder side (Alcott Unit) and the psychiatric side (Thoreau Unit).  I was on Thoreau because I refused to go to Alcott, which is 100% voluntary (until you sign the CV, that is) and because I have another illness in addition to anorexia. There was a lot of crossover with Alcott, so many of the regular staff at Thoreau were extremely knowledgeable about eating disorders. But most of the patients at Thoreau were there for alcohol or drug-related issues. So the program there had an addictions focus.

As the ambulance guys who had brought me to Thoreau took their stretcher and left me there to fend for myself, I realized right away that this hospitalization would be different.  I was immediately surrounded by kind, caring staff people who were there mainly to make sure I felt comfortable and safe.

For a while, I wasn’t getting better; in fact, I was getting worse.  A lot worse.  Folks were worried.  Finally, the doctor told me what I think I’d known all along: that I had been worsening to the point that I would need long-term care in a state hospital.  Even nearly dying hadn’t scared the eating disorder out of me. The time had come.

The state hospital….It was the threat I faced in 1997 when I was ravaged by The Thing. To someone with anorexia, life in a state hospital may seem worse than death by starvation, or so it did to me. This was the lowest of the low.

But the staff helped me realize that I was capable of avoiding that horrible place by eating and helping myself.  It took a while, but once I got started, it got easier to eat.

I stayed a total of 26 days at Walden Behavioral Care’s Thoreau Unit.  They kept me a long time because they wanted to make sure I’d be okay once I left.

On August 26, I wrote:   “It’s been a tough battle.  I struggle daily.  I feel hopeless that I will ever recover, and am certain that anorexia will kill me someday.  I sense that people are pulling away from me, or are afraid to get close to me, for this reason.  I feel as though I am dying, and that something is already dead inside my soul.  It is a lonely existence.”

While in the hospital, I began to realize that if I continue to eat, I will feel more and more alive inside, and be stronger and more motivated, and have hope and be able to fulfill my dreams.  I had given up hope that I would be able to do National Novel Writing Month this year. but now, I plan to do it.  I have a lot to look forward to.

My spirituality and belief in God seem to be returning to me.  If anything at all was helpful to me in any prior hospital I’ve ever been to, it was the talks I had with the chaplains.   Maybe bringing God back into my life will help my anorexia.  Maybe not.  But I know that every time I talk about God or think about God, tears come into my eyes.  It’s something I can’t explain to most doctors.  I lost my faith when my eating disorder came back in 2008–or did I?

I hunger.  That is what it all boils down to.  Whether I am nourishing myself with adequate food or not, I hunger in my heart.  And one of the chaplains I spoke with said that if you are hungry, then you hunger for God and already have  God in your heart.  This was a comfort to me to know.

Maybe someone has been walking beside me through this whole relapse, and I didn’t even know it.

Maybe.

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