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 murdered 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,