for the Patients Speak pages at F.E.A.S.T.
December 2009 (SEE January 2010 UPDATE BELOW)

I am a unfortunately a current, rather than former ED patient, but I do have a message for parents nonetheless. Keep doing what you are doing! The strength, love, dedication, constancy, and support that you　provide your children, as you make sure they take the "medicine" they need to get well, is nothing short of amazing.

A short background on me: I have dealt with every form of this horrible illness at one point or another. I have been clinically anorexic, EDNOS, and bulimic at various points throughout my life. I am now 27, soon to be 28 years old, and I have been dealing with this illness since the age of 12. I have been in therapy and in and out of treatment facilities 4 times. I have little to no support from my family. When I lose weight to the point of emaciation, my family compliments me on the weight loss. When I gain much needed weight, I am berated for that weight gain. Growing up, if I (at a completely normal weight) were to get a stomach virus, my mother would say "So it won't be a total loss-you'll lose a few pounds". My mother sees nothing wrong with restriction, however, she has openly let me know that the bulimic aspect of my disease disgusts her. Through my mother, I learned at a very early age that my body deserved punishment. As a loyal daughter, I lived by this dictum for many years.

I stumbled upon this site one day and have been a "lurker" ever since. I'm not sure if it is odd, but I derive such a sense of strength and comfort from reading the posts of the parents on here. I can't imagine my parents putting the effort in to understand EDs the way the parents on this board try to. I can't fathom my parents dropping everything to help me fight this monster. Although I am an adult with a masters degree and a solid career, on the inside I am actually very fragile. I would give anything for my parents to fight my disease alongside me, because I'm honestly not sure if I'm strong enough to fight it myself.

My disease manifests itself in different ways; right now I am struggling to eat. I am feeling undeserving of nourishment and also repulsed by food and the act of eating. I am trying to use the wisdom that I find on this board to help me get by, the idea that food is "medicine". The only hard part is convincing myself that I do indeed deserve this medicine.

In closing, I just want to commend all of the parents on this site and elsewhere who are committed to fighting their child's eating disorder with love, and compassion. You are amazing people. I know what a beast this disease is firsthand. It does not go quietly, but with the incredible parents on this site and elsewhere fighting alongside their children, I know that it can be beaten. You have all given me hope.

Sincerely,

J

UPDATED IN JANUARY, 2011

Dear Laura,
  
I'm not sure if you remember me, I wrote a letter to the FEAST  website  several years ago-I believe it was titled A Letter From J. I  wanted to give  you a brief update. I know that you  must be very busy and I really appreciate  you taking the time to read my  email.
   
To be honest, I'm not quite sure what I even wrote in my original  email, but  it has certainly been quite a journey! There were so many  times over the  past few years that I was so deeply entrenched in my  eating disorder that I  can't believe I'm where I am today and the
 FEAST website truly played no  small part in that.
   
  I was living and working as a biologist far from home for the past 6  years.   Away from prying eyes, and following the murder of a close friend and  a huge  support, the RAN became completely out of control. My weight  plummeted to  the point where there were rumors going around the  organization that I  worked for that I was undergoing treatment for  cancer (I didn't find this  out until later). I wanted no part of a  world in which a murder like this  could occur, and I reacted by  essentially punishing myself for being alive-I  existed on next to  nothing, and when I did eat, the food had to be cold and  hard.  Nothing warm or comforting existed in my world anymore-none of the hot  oatmeal that I loved, or hot chocolate. My world became very cold and  bleak.  I stopped seeing friends. When my parents saw me months later, they  were  beside themselves, and they said later that it was like I was  already gone.

Our relationship had never been great (although it has very much improved)  and at the time it was very complicated-I thought they  didn't care enough to help me;  they thought I didn't want their help.  My treatment team, I believe now,  completely dropped the ball and let
 me spiral. I told my psychiatrist that  when I stood up too quickly I  saw black spots and had even passed out. He  suggested I see an  ophthalmologist and told me to stand up more slowly. In  short, the  golden girl with the perfect grades, the great friends, the sweet  
 smile-her life was crashing before her eyes and was completely and utterly  alone.
  
The trial for my friend's murderer finished and suddenly, I started  not  eating again, but binging and purging. As crazy as this seems, it  probably  saved my life because at least I was getting some  nourishment because before  I was getting next to nothing, my  treatment team was doing absolutely  nothing about it, and my parents  were states away. I gained weight back up  to a healthy weight, but  because it happened so quickly (nearly 50 pounds in 4 months) I was utterly miserable. The bulimia was raging out of control.

Unlike the RAN which was insidiously quiet, which numbed and  comforted me, I  could not tolerate the BN. I saw it as dirty and  impure. It was disrupting  my work, which had already suffered  considerably since the murder of my  friend and the terrible AN  relapse. I told my treatment team that I need to  go IP, and I went to  Remuda Ranch.
  
I worked hard when I was there, but I was so ashamed that I was "fat"  (read "normal" weight) that I struggled. I wanted desperately for the BN to  be  gone, but I truly saw nothing wrong with the restricting part of  the eating  disorder, which I really didn't recognize as AN because I  had never been  officially diagnosed, despite having met the weight  requirement and all  other diagnostic criteria. I completed Remuda's  program and insisted that I  could not do any step down programs because I had to return to work.

This was a mistake, as I relapsed with BN almost immediately.
  
I struggled with it deeply and only two or three months later,  I  called my  T (who was not an ED specialist) and told her that I hadn't  kept anything  down in days. She instructed me to drive myself to the  nearest ER or she  would not be able to work with me any longer. I did
 as she said and ended up  in the psych ward at the local hospital. It  was completely inappropriate for  my ED, not to mention traumatic. The  staff had no knowledge of EDs and spoke  to me as though I was having  a psychotic episode. I was not eating, and not  monitored after meals.  After a week, I was transferred to a facility that  dealt with PTSD
 which I absolutely had from the murder of my friend.

However, they again had no knowledge of EDs, and mine was raging out  of  control. I had to go to all these places completely alone. It was  at this  facility that I decided that I was going to quit my job, take  some time off  to travel, and then really commit to recovery. My job  was very triggering  for me as my murdere  d friend had also been a  colleague.
   
I did all this, and it helped for a while. I quit my job and it was relief. I traveled around Europe and visited friends. But it was all  essentially an  escape. When I came back, I still had to face myself,  and my life, which I  basically felt had become not worth living-I
 thought that I had destroyed  it. I saw my therapist several times a  week and was still a disaster.

I realize now that she should have seen she was not helping me and  should have  referred me to an ED specialist. The bulimia was still  out of control. The  medication wasn't helping-I was depressed and  anxious with constant panic  attacks and thoughts of suicide. My
 roommate was absolutely sick of the  eating disorder and told me  multiple times that if I couldn't get my act  together, and stop  binging, purging and starving, or if I had to be  hospitalized again,  he was leaving. It stayed this way through the spring.
   
This past summer, I had the most severe relapse of RAN that I have  ever had,  in my nearly 17 years of the eating disorder. It came very  quickly, and I  suddenly realized something. I wasn't choosing not to  eat. I COULDN'T eat. I  physically could not do it. I moved back to my  home state, in with my  parents. They have never experienced my ED out  in the open like this, this  intensely. When I was living with them as  a teenager, I hid it. And when I  struggled as an adult, I lived away.  So this was new territory. My weight  plummeted nearly 50 pounds in a  little over two months. My parents got more  involved with my  treatment. I got a new team and I vowed to do whatever it  took. I  also rediscovered your website, which is a big part of why I'm writing to you and telling you my story.
   
My new team is really wonderful. When we first found them over the  summer, I  was an absolute mess, physically and emotionally. I'm 28,  but I felt as  though I were 100. I couldn't walk for more than a few  feet without being  exhausted, or even sit up for more than a few
 minutes without profound  dizziness. I was exhausted and drained. My  labs were a train wreck. Emotionally, I saw absolutely no way out of the black hole I was in.  I was terrified of food-plain and simple. The physical act of eating was  enough to  induce a panic attack where I would shake, cry and worse. I  didn't want to  gain weight but I also didn't want what the food  did-to connect me with the  world, to make me solid and real.
   
I started out slowly, and for a long time was very dependent on supplements-they were really all I could tolerate, and it would take  me two  hours to do one Ensure Plus with coaching from my best friend or dad.  Then I would do broth with soft things in it, like tofu, and then scarier  things,  like noodles and worked my way up. But as I said, I found
 your website and I  found a lot of strength from the wonderful carers  posting on the site. I  found myself thinking "If their sons and  daughters can do this, then so can  I". I also found that you guys are  SO right-as my nutrition began to  improve-albeit slowly, my thinking
 did become clearer and I actually found  myself entertaining the idea  of recovery, even though it was frightening  (Just to fast forward you  to today, I am now so excited about recovery that  I can't stand it. I  love, love, love the thought of recovery). But I  digress....so  anyway, there I was, reading your website and thinking, maybe  there
 is something to this full nutrition thing, and this "rip the bandaid  off" idea. So I proposed, by  myself to my team that we up my  nutrition so that I was where I should be,  eating a full meal plan. I  said that I don't want to use supplements as a  crutch anymore. I want
 to eat real food. And I will kick, scream, cry and  crawl my way  through every meal, but I am going to DO this, no matter what  it  takes.
   
The thing was, my parents and I weren't exactly doing Maudsley or FBT  or  anything-as much as our relationship has improved, they just would  not be on  board with that. And to be honest, I find myself a bit  envious of adult  children whose parents would do that for them,  because my parents just  wouldn't. But I started eating more, and I  started preparing my meals  myself, since I didn't have the option of  Magic Plate-and yes, I can tell  you first hand, there is a LOT of  anxiety involved but I did it because I  knew how important it was to
 get my brain and body healing. In September, I  moved into an  apartment with my best friend whom I have known since I'm a  baby. She  is the most amazing and wonderful friend, and incredibly  supportive  of my recovery. She helped me a lot with the cooking and  re-feeding  process. I am also started graduate school in counseling  psychology  at NYU and fell in love with the program. I'm also now closer to  my  other best friend from college and have been meeting new people and  getting back in touch with old friends, even dating  some (which is  definitely nerve wracking for me!). I'm doing a Day Treatment  program  here, which is helpful in providing structure and meal support, and   also taking some anxiety of meal preparation off of me.
 
Basically, I just wanted to let you know how instrumental I feel that the principles of Maudsley and FEAST have been in my own recovery, as  well as  the very amazing ATDT forum. I truly have learned so much and I genuinely  feel now as though there are no good foods or bad foods anymore; all  foods  fit and I deserve nourishment because I am a worthy human being.
   
I have dreams of one day using my degree to help others with eating   disorders-I know obviously that a lot will depend on that and I completely   plan being fully evaluated by my doctors when the time is right, as  well as using my own judgment, to determine if it is the best course of  action for me. If it would in any way be unhealthy or triggering for me, I
 wouldn't do it. But if I can, I have so many ideas. And I would love to be a FBT,  supporting families who are using the Maudsley Method to refeed,  because out  of everything I have read, it just makes so much sense, and is just  such a  lovely, gentle and caring way to battle this terrible illness.
   
Anyway, thanks so much for taking the time to read my letter, and for  all  the amazing and wonderful work that you do. You are truly making an  incredible difference in so many lives. I honestly never thought, in  all my  years with this disease that I would be able to say this, by I KNOW I  am  going to make it.
 
With much love,
J