In honor of National Eating Disorders Awareness Week (February 24-March 2), I would like to share with you a very personal, authentic, and profound glimpse into what it means to have an eating disorder. In place of providing you with basic eating disorder information and statistics, I instead leave you with this story of a young woman’s commitment, sacrifice, and determination to recover.
This blog entry took me several drafts. Not surprising. I have an eating disorder. Things are supposed to be perfect. In fact, I had 5 different drafts before I finally submitted this. I had so many ideas but I needed to pick one. I decided I wanted to give some insight into what it takes to recover from an eating disorder. The time, effort, patience, support, and exorbitant amount of money that is required. It is a genuine illness, deadly and inexplicably painful and to that end, it deserves the same attention and fear as any other life-threatening illness.
12 months ago, I didn’t know what recovery meant. I didn’t know the difference between “recovery” and “recovered.” As I have been taught, recovery means that I still think about my eating disorder. I still turn to it when things are tough, but I do not engage in my eating disorder behaviors, for the most part. I am still, however, in dangerous territory and a relapse is a very real possibility. Recovered, on the other hand, means I do not have any form of eating disorder. I eat as I want, appropriately, in moderation and without denying myself. I exercise for my health rather than weight loss and I never think about losing weight. I have fully accepted who I am. No traumatic event could trigger me back into my eating disorder.
I am new to the world of recovery. I am not new to the world of eating disorders. For 14 years, I’ve had one. Actually, I’ve had them all. It started with Anorexia but very quickly Bulimia joined my life and brought with it, exercise addiction, purging, and laxative abuse. Not to mention Depression.
Recovery from an eating disorder doesn’t happen in a residential treatment facility. It doesn’t even happen in a Partial Hospitalization Program (PHP or day treatment) or Intensive Outpatient Therapy (IOP or partial day treatment) https://www.eatingdisorderhope.com/treatment-for-eating-disorders/types-of-treatments#Levels-and-Types-of-Eating-Disorder-Treatment. It happens when you are stable enough to be able to get up, have a shower, get dressed, eat all your meals and function properly by either holding down a job, caring for children or going to school. But without residential treatment, most people who have been living with their eating disorder for a long period of time cannot even get to the point of starting the hard path towards recovery. I say most because there are some exceptions…I know a couple. I take my hat off to them and deeply admire them. Despite trying for 13 years, I was unable to recover without residential treatment.
Residential Treatment Centers or, at least Partial Hospitalization Programs, help stop the behaviors for a period of time. They stabilize the patient, re-feed, re-nurture and in many cases, are about showing the patient there is a way out of the inexplicable and excruciating pain they are in. There is freedom but it is a LONG, LONG, LONG, way back to that freedom. It takes dedication and sacrifice, money, patience from family and friends, and lots and lots and lots of love. This is something that I have learned on my journey that started almost 12 months ago.
I had never heard of Eating Disorder Treatment Centers until December 2011. By mid-March 2012, I was in one. In about November 2011, I told my brother that I was done. My eating disorder had taken over every aspect of my life and no matter how hard I tried, I could not stop purging. I was in pain that I never knew possible. My chest ached to the point I prayed I was having a heart attack. That would have been a blessing compared to the turmoil I was in. It was truly unbearable. I told my brother I couldn’t live with an eating disorder anymore. He agreed…for the most part. I was looking for permission to die. He wouldn’t give it but said he would get me wherever I needed to go to get help. He also told me that if I ended things, he would never have another moment’s peace again for the rest of his life. He guilted me into living.
Three months later, after a lot of research and a long waitlist for my treatment center of choice, my Dad took me there. He checked me in, hugged me and cried with me and then told me to set myself free. He then left. I cried, was fed dinner, was taken to the bathroom, was fed again, cried then was put to bed. If it sounds like a nursery that’s because that is what it is like. People with eating disorders have, more often than not, completely lost the capacity to look after themselves. I had NO idea how to eat. I had no idea how much was appropriate. I had no idea what over-exercising meant. I am an intelligent person but honestly, by the time I got there, I could barely dress myself. In fact, some days, I actually couldn’t.
A couple of days after I settled into this new treatment center, over Skype, we had our first family therapy session where some hard truths were told. Firstly the notion that I would be “done in 30 days” was immediately dispelled. I had, along with my family just thought I needed someone to help me stop this disgusting habit of purging my food. Then I could get on with life. How wrong we all were. My therapist explained to my parents and siblings what an eating disorder was; a really bad coping mechanism that over the last 13 years I had used in almost every facet of my life. I had been completely brainwashed into hating myself and despising and abusing my body.
Her next piece of news; the recovery period would be 2-5 years. Thankfully I was still pretty numb at this time.
And finally, “She won’t recover in our facility. She won’t recover in PHP or IOP. We will stabilize her, develop new routines, and teach her a set of tools to be able to use instead of her eating disorder. We think she should remain in residential treatment for at least 3 months so we can stabilize her. We then recommend that she stay in this city for no less than a year from the time she leaves us. This is because of the support network available here and so she can then step down to a PHP program close by and then IOP. Once her program finishes, she will then need to remain with a therapist and dietitian.” I now realize, after seeing the high rate of relapse, that this recommendation gave me the best chance at recovery, but also meant that I would have a support network to catch me if I did relapse. I think that was the point at which my parents realized how truly sick I was. I had been pretty good at hiding it for the last decade.
I didn’t think things could get any worse. Enter Insurance. On top of the fact that I now had a 2-5 year diagnosis, added to the 14 years my eating disorder had already controlled my life, I was thousands of miles away from home, scared, depressed and petrified, insurance was telling the facility that they thought I needed a higher level of care. This was due to my depression. I had told the nurse, doctor, psychiatrist and my therapist when I got there, very calmly, that this was my last stop. If they couldn’t help me recover, I was going to kill myself because I could not live like that anymore. The irony was, up until this point, I still didn’t think I was that sick or that I need to be there. I remember suggesting that “fat camp” would be a better idea than residential treatment to the nurse.
It took the psychiatrist there 2 weeks to satisfy the insurance company that I did not need a higher level of care. My eating disorder was the root of my depression. I had started talking, opening up. I actually felt like I could breathe again. I felt safe for the first time in 14 years; my eating disorder couldn’t hurt me there. I was motivated and worked harder there than I ever have in my life. There was a glimmer of hope. I also let people see me, in all my pain, uncovered, for the first time in 14 years. In fact, that was the first time I had said bulimia to anyone other than my brothers in 10 years.
People constantly ask me what a typical day at treatment looks like. Do we watch TV and drink Hot Chocolate? I always laugh when I hear the hot chocolate question. To a girl with an eating disorder, eating hot chocolate is NOT enjoyable. In fact, in order for that to happen, there may need to be a therapist sitting with them to help them through and then staying with them afterward to ensure they do not purge. That’s what an eating disorder does – it takes a simple and what should be pleasurable act, and turns it into torture.
Back to what a day consists of. It looks something like this: wake up, vitals, weigh in, then take a shower. Breakfast, a small amount of exercise (if you had been approved), snack, therapy, lunch, therapy, snack and “free time” (I use quotation marks because how free can free be when you are observed going to the bathroom to make sure you don’t purge, you are not allowed to watch tv, go upstairs, go in the kitchen or go anywhere you can’t be seen). But we were “free” to play cards, sit on the swing, use the communal phone if no one was on it, play a game or go and talk to a therapist. We then had dinner, more therapy, another snack, “free time” and then finally bed.
It sounds like the whole day revolves around food, doesn’t it? That’s because it does. We don’t know how to eat. And let me explain, that meal times are torture. There are often tears, tantrums, silences, and outbursts. But these are not children, for the most part. These are full grown adults, dealing with excruciatingly painful issues and a severe and deadly mental illness. But the therapists know what they are doing and they do get even the most non-compliant patients to eat.
Two weeks after the higher level of care was recommended a doctor from my insurance company called to advise that I no longer required residential treatment because “it was not medically necessary.” I was “no longer purging.” I had never met this doctor. He was the same doctor who wanted me in a psychiatric ward 2 weeks earlier. I was to leave the next day unless my parents could come up with $1400 a day. My family pooled together what they could and I stayed another 2 weeks before I went to PHP. Prematurely? Yes. But insurance advised that unless I left the residential treatment center soon, they would not pay for PHP because I was now “eating into my PHP time.” Excuse the pun. So now the insurance company was dictating my treatment. Because I was reliant on them for PHP, I had to comply. Even in my crazy mind with my eating disorder, I knew this didn’t make sense. But I left. There wasn’t much money to draw on and my dad had the excellent foresight to anticipate the financial help I would need after insurance inevitably would cut out at PHP level.
I struggled through PHP and worked really hard. I didn’t purge. I was so proud of myself. I had 7 hour days at the clinic, no car, no family and lots and lots of time. Add in the fact that I wasn’t ready to leave residential treatment and the result was a return to my exercise addiction. I focused so hard on not purging my food that exercise seemed like the perfect solution. The insurance company was equally impressed at my not purging and rewarded me with dropping me down from 7 hours a day, 7 days a week, to IOP which was 3.5 hours a day, 5 days a week. Three weeks of obsessive exercise followed before I was put back up to PHP. Two weeks later, insurance deemed me “non-compliant” because I couldn’t stop exercising. My therapist tried to explain to them that this was what happens when you stop treatment at a residential level too early. They didn’t care. They denied any further treatment and I was on my own.
How did I survive? Angels. I have a dietitian who has been with me since the day I walked through the door of the residential treatment center. I adore her. She suspected insurance would not give me sufficient time and said we had to develop our own “IOP.” So I had sessions with her and more sessions with my therapist who is also phenomenal. I struggled and struggled my way through. There are a few other angels that entered the picture as well; new friends and an eating disorder community who are compassionate and kind. As well as compassionate and understanding employers who gave me a chance despite knowing I had an eating disorder. More Angels.
It is almost 12 months since I went to residential treatment and the last time I purged was the day before that. I have had problems with exercise, restricting and depression. The commitment and sacrifice I have had to make in pursuit of my recovery cannot be measured. I have built my entire life around my recovery. This has meant burying my head in the sand at times. I went through all my savings, accrued debts and am still financially dependent on family members who can’t necessarily afford it but they don’t care. My being alive outweighs any financial concerns. Insurance cut me too early. There was no dispute about that. So I had to pay more out of pocket to get the support I needed. No one cared. My biggest expense is my medical bills, it even surpasses my rent, but fortunately, my family helps out.
I’ve also lost friendships through being so absent, not just physically but mentally too. When I go back home for visits, I’m different. And most people don’t understand how bad an eating disorder is. Furthermore, I don’t want all my friends knowing. It’s too hard to explain and there is still a lot of shame attached. I also don’t want to be ‘that girl who had the eating disorder.’ Maybe one day I won’t mind but right now, the best I can do is keep going with my recovery, working and trying to live as normal a life as possible.
Those are the logistics. The daily internal battle is just as hard. I have ups and downs all the time but that is because every single day, I have to try and convince myself that me, in my body is enough. My body will not be “acceptable” if I lose another 10 pounds. I will not love myself if I lose another 15. I am not disgusting, hideous, ungrateful, a burden, draining, revolting, unlovable, miserable, or any of the other thousand horrific adjectives I have used to my describe myself. I am a good person, beautiful as I am. The only hideous thing about me is this eating disorder and that I would allow it to hurt me so deeply and inflict so much pain. Unfortunately, I don’t believe these things yet. I am working very hard to though.
People often say, “you must be so proud of yourself.” I am but I am not there yet. I can acknowledge how hard I have worked but there is no room for complacency. I’m not recovered yet. Until I am, I am always in danger of slipping back into that nightmare that robbed me of so much in my life that I can’t fathom how I could ever have kept it around. The only explanation is that I was seriously sick. Someone who cannot stop hurting themselves so deeply and potentially fatally is seriously ill. If the internal pain was visible, they would probably get the treatment they need more easily too.
Kantor & Kantor, LLP’s Eating Disorder Practice
Dealing with and seeking treatment for eating disorders can be emotionally and financially devastating, but it doesn’t need to be that way. Kantor & Kantor, LLP has developed a specialized legal practice representing clients whose claims for treatment of eating disorders have been wrongfully denied by their insurance company. If you have been denied treatment for an eating disorder by your insurance company, we can help. Call our law firm or contact us online to learn more about how we can help you. We offer no-cost consultations, and we work on a contingency fee basis, which means you don’t pay us a fee unless we get your claim paid.