I get sent treatment story emails, and I sometimes ask permission to publish them. I think sharing stories is important, and hope that they reach treatment professionals. If treatment professionals can open themselves up to learning from patients rather than relying only on the information that they have been taught, I believe the eating disorder treatment field will improve leaps and bounds.
I have been caught in the anorexic trap since I was 14. I’m now 54. I’ve had various in patient stays and different treatment approaches between 14 and 24 but have managed to stay out of hospital since then. I got my self into a phase of low but ok weight but obsessed with physical activities to the point of exhaustion everyday. This was just seen as me liking to keep busy and fit. Even though I just wanted to stop and rest. Anyway, I’ve had a quite a few episodes over the years where my weight has plummeted due to anorexia but I’ve usually managed to get myself into a better place. However over the last couple of years I was really depressed (depression has been with me my entire adult life) and the anorexia took such a hold.. not eating, excessive exercise. My weight was so low, I was so, so cold all the time, everything hurt, I could hardly walk but I made myself. I was so done with living. I’d sort help from my GP who referred me to a psychiatrist who referred me to a eating disorder clinic at the hospital and a counselling agency. I had to go for assessments, go through where I was at etc, then had to wait and wait on the waiting list. I’d had enough and shortly after that I took an overdose and ended up in hospital on a drip etc for a while. I was then discharged back into the same situation. Fortunately I found you, your site, your books and followed and read everything. And that started me onto my recovery trail. It’s hard. The thoughts, the fears the feelings. I’ve no one to talk to. Finally eating disorder appointment came through but the counsellor and doctor wouldn’t accept me for treatment because I said I didn’t want to go over my childhood. I can’t change that and I want to deal with now. They also wanted me to keep a diary of everything I ate, and record how I felt. And weigh my self. I’ve struggled hard not to weigh myself since trying to recover and don’t want to focus on what I’m eating and have to record it. They said I wasn’t being compliant with their methods. They said that as I was no longer a low weight and looked normal I couldn’t be seen. I’d so longed for this appointment to help with the mental anguish and all the other crap that goes on inside but I felt so dumped. So I’m back on my own and you for my help. I can’t thank you enough Tabitha. Even though I was criticised by doctors for reading and listening about anorexia recovery. They haven’t helped me and I’m still struggling. Especially with how to fill the big gaps where exercise use to be. No friends. Children grown and don’t need me. Feel useless and worthless. And bored. Anyway, long ramble, it sincere thanks for getting me where I am now. Not recovered but maybe one day. Or maybe doctor is right who said I’d never recover as I’d had anorexia in too long
Learning points from this email:
- Exercise is a pernicious element of an eating disorder for many people. It is still overlooked.
- Weight is not an indicator of mental state, or mental health, or even physical health for that matter.
- Patients can and do educate themselves, and should be listened to when they ask for help.
- Keeping a diary of what one eats is disordered. Eating disorder recovery should not require disordered behaviour.
- Depression is very common in people with enduring eating disorders and it is a killer. Eating disorders have to be taken seriously as medical emergencies regardless of the weight a person presents at.
I listened to your podcast about experience in an eating disorder treatment facility and I was so relieved to hear somebody else speak out. I really feel like eating disorder treatment is in the dark ages and it is unacceptable.
I wish I would have had realistic expectations going into residential treatment for anorexia. They said this was my first step to getting better and reclaiming my life. What they didn’t say is, “look around you. Most of these people have been in and out of treatment for years. A few of you might get better. Most of you won’t. And chances are high that you will get much, much worse.”
My experience was so traumatic that it’s taken me about a year to process and understand what happened. I don’t remember a lot of it still. Pieces come back here and there.
I’m just going to lay out some pieces of my experience objectively. I might be a little vague because honestly I still don’t feel safe but you’re welcome to ask questions or inquire about anything if you feel compelled to do so.
Again please feel no obligations here. This is helpful simply by providing a way for me to piece things together and send it off.
So here it goes…
About two years ago I was admitted to a residential treatment facility for anorexia. I was underweight. I was in crisis, it made sense.
I was so scared. I have a trauma history that makes me very susceptible to retraumatization though I was not aware of how that works at the time. They treatment center I was in claimed to be trauma-informed. I have since learned that their practices are quite the opposite.
I don’t really remember much of my first week or so there. I do remember my first meal there. It was directly after the initial medical exam which was very disturbing for me. I was mostly disassociated at that point and I had no idea about being meal rules or customs or really anything about treatment. They put a sandwich in front of me. I did my best and I ate some of it.
After our allotted half an hour, the patient care attendant supervising the meal said to me, “not completing and refusing to comply with your meal plan is unacceptable. You get a pass this one time because you are new here.”
I then met with my dietitian. She told me that during my stay here I will be required to weight restore. Though they had no medical history on me, my dietitian informed me that they knew exactly what my target weight was. When I asked questions about how they could know this, they told me that they based this off calculations. Because I have an eating disorder I was not allowed to ask any further questions about these calculations.
After about a week of trying my absolute best to complete meals, I thought I was doing okay. I was consuming so much more than I had in so long. While I wasn’t completing and was being reprimanded and shamed by staff daily for this, I was medically stable and also dealing with acute anxiety, PTSD and extreme nausea.
One day my dietitian informed me that I was not restoring as quickly as they would like and that if I could not complete every meal in the next 24 hours that I would face the possibility of a feeding tube.
The next morning I was given Klonopin and then taken into a back room. One person held me by the shoulders while a nurse inserted a feeding tube through my nose and down my throat. I honestly don’t remember if they asked for my consent because I had never taken benzos before that morning.
This incredibly invasive and extremely painful procedure broke me in a way that I can’t really describe. I remember being on the floor sobbing and unable to understand what was going on. I pleaded to just be alone. They told me, “you have five minutes to pull yourself together.”
Later my team told me that the feeding tube was not a medical necessity but a motivational tool.
Having a feeding tube made it too painful to eat at all. The violation of the initial procedure and of being tube fed put me in a constant state of shock.
They did know that I had a trauma history and a PTSD diagnosis. I was told early on that this stage of recovery is not appropriate for dealing with or acknowledging trauma. This was fine with me because I had never talked about it before and the notion of doing so scared the s*** out of me.
However, my eating disorder and my trauma are so intertwined that they cannot really be separated. The trauma of the tube placement, the loss of autonomy, continuous tube feedings, oftentimes while I was sleeping we’re never acknowledged as anything except a consequence to my refusal to comply with my meal plan.
I was not very educated on my PTSD diagnosis unfortunately so I did not understand what was going on with me. I did not understand the concept of retraumatization. I didn’t understand that that is what was going on. It is so clear now.
Even if someone has no trauma history, being examined, searched, absolved of privacy and personal space, all in a new environment with other patients and strange new authority figures treating you with suspicion and doubt is dis regulating to say the least.
Eventually I concluded that I deserved what was happening to me. That I was to blame for everything because I struggled with anorexia.
I spent the next months there completely disassociated and detached. I remember very little of it. After a while, due to my failure to take in enough food on my own to earn the privilege of having the feeding tube removed, they made this threat:
“Starting in a few days if you don’t complete your meals we will remove the tube and place it again every night until you comply.”
So under the threat of this painful, traumatizing, invasive medical procedure being done daily for the sole purpose of “motivating me,” I began to comply with my meal plan. And was eventually discharged.
I left defeated, dehumanized, dealing with more shame then I ever thought possible. Food no longer had any appeal to me. It only represented my failure, extreme fear, trauma and pain. There was no pleasure on eating left. None.
I did try to get out early on. I pleaded with my husband to take me home. I told him that I didn’t think this was what help was supposed to feel like. But they had coached him from day one. They told him that I would want to leave and give him many reasons why but that this was the disorder talking.
They fed him and all of our families the following line, “you are always welcome home but your disorder isn’t.”
When we would pleaded with our loved ones to listen, they had already discredited us.
All of my attempts at self-advocacy from that point forward were met with the response, “that is your disorder talking.”
They had patients with co-occurring issues that they had no capacity to deal with or care for safely.
One girl who had been there for months, had violent flashbacks daily. She sustained head injuries during these flashbacks routinely. Because of understaffing or simple incompetency, there were several instances where other patients had to hold her back to prevent her from seriously hurting herself.
This sweet, young girl, and the other unfortunate tube-fed souls, we’re not allowed to go outside for weeks or sometimes months at a time.
When I got discharged, a blood test soon after showed that I was critically low in vitamin D. Of course I was. I hadn’t been outside in over a month. For others, it had been longer.
Eventually, due to this poor girl’s inability to take in enough food orally, they acted on the threat and began taking her feeding tube in and out everyday. After sometime of enduring this, she had such a violent episode that they had to call 911 and we never saw her again.
As a consequence of her disorder, she had not allowed to see her family for weeks. I think about her all the time.
This practice of removing and then placing the tube daily is also used on adolescence. Children as young as six-years-old. We were on the same floor as them but a different wing. We could hear them screaming.
There were several nights where 16 + patients were left overnight with only one staff member. The staff member confided in me through tears multiple times that she knew she was unable to keep everybody safe by herself. Many patients were on suicide watch at the time.
One night they were unable to staff the hospital so we were left alone for hours. Naturally, having been stripped of any free will we took the opportunity to run wild. The wheelchair races and cartwheels were fun. People openly engaging in disordered behaviors or self-harm we’re not so fun. The next day we were reprimanded for not taking responsibility to keep ourselves safe.
Of course, there was such a culture of sickness, such a competitive nature to these insidious disorders. The restricting was contagious. Especially among the younger women there. It is so difficult to eat while watching everyone around you restrict.
The way we were treated was solely based on the number on the scale. While they simultaneously preached that the number on the scale doesn’t matter, it was your only ticket in or out of this hell. If the number went the wrong way, you didn’t want recovery. If the number went the right way you were deemed to be recovering. How did they come up with these magic numbers? The only thing they would tell us was,”calculations.”
I too, saw other patients ask for more food and be denied with devastating consequences. It crushed them. It confirmed there mistrust of their own bodies.
We were supposed to be learning to take care of our bodies. Yet when these patients voiced that they were still hungry, they were told, “no you aren’t”.
If ever I had any questions about my meal plan, I was told it was the disorder talking. If ever I questioned the methods of treatment, it was my disorder talking.When I resisted having the tube placed, you guessed it, disorder talking.
Any attempts at self-advocacy were dismissed as my disorder talking. I was gaslighted. We were all gaslighted. It was always the f****** disorder talking. I left with no sense of self. No confidence in my judgment of any kind. This led me to tolerate abusive behavior in my personal life for some time after.
So many people with eating disorders have trauma histories. Why are these treatment centers treating trauma with trauma? how are we supposed to heal you when we are denied autonomy or any control of our own process? How can they justify using punishment in the form of painful, invasive, and sometimes dangerous medical procedures?
When this largely traumatized population is seeking life-saving intervention for their medical condition, they are being stripped of their personal boundaries, their autonomy, their own insight. They are told over and over again that they are too sick to trust themselves or be trusted.
Patients are so critically and chronically invalidated that they become dependent on this entity that claims they have the only path to recovery.
It is like a religion. You are told to blindly comply beyond logic. Surrender to the process is how they would put it.
If you don’t eat three meals and three snacks a day then you’re restricting. If you eat more than that you are binging.
If your body says it is full, it is wrong. If your body says it is hungry, it is wrong. It’s the disorder talking. You’re only allowed be satisfied is you consume exactly the allotted amount we decided on, with out having ever experienced being in your body and having dismissed your accounts of your own body’s ques.
I left so confused and hopeless and heavily drugged. And more disordered than ever.
Honestly I’m still so terrified that somehow I will be sent back to treatment. That I deserve it and it will somehow catch up with me. I have nightmares constantly. If that is what recovery is, I don’t want it.
Some wonderful people I met at this treatment center now suffer from PTSD related to their experience there. People are beginning to speak out. And thank God. Because I was led to believe that all the voices telling me that this is wrong and that they are hurting me were just my failure to really want or commit to recovery. That my intuition is invalid because I have an eating disorder.
I feel like I have written a lot without really saying very much but I will leave it at that for now. This is just a fraction of what I experienced in this place.
But I’m going to be okay.
Thank you for speaking to your experience. It helped me and those I shared it with. It helped us reclaim our own voices a little bit.
The way people with eating disorders are being treated in the medical facilities that are supposed to be saving them is unacceptable. We are getting sicker. We dying. It can’t go on this way.
I don’t really know where to start with this one. Oh wait, yes I do: People with eating disorders are human beings. They are not delinquents. They are not stupid. They are not refusing to eat because they are acting out or trying to get attention.
Food is medicine if you are in recovery from an eating disorder. Eating more food is always right. Eating more food or “binging” is not wrong when one is in recovery from malnutrition. Hunger should always be supported.
Treatment should not be some weird power play, where the professionals “in charge” get to do what they want to the people in recovery. One of the key things I learnt from my own recovery, and from working with so many other adults in recovery, is that in order for a person to make a full recovery, they have to do the neural rewiring. That won’t happen unless they are making the decision to eat themselves. Weight gain alone doesn’t achieve full recovery. With this in mind, the real test and skill of a treatment professional is found in the ability to get buy in from patients. The challenge is to support people in recovery to commit to recovering, and doing the work themselves. Threatening them with a painful experience and traumatizing them isn’t going to achieve buy in.
I guess another learning point is that people should not come away from an eating disorder treatment centre more traumatized then they were when they went in? That should do without saying, but I’ve heard enough accounts to the latter that I know it isn’t always the case.
Shame on us, as a society, for this approach to healthcare being acceptable.