Eating Disorder Treatment Experiences – M’s Story

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A Favourite Quote Of M’s

 

First off, I want to say I DO understand that any institutional setting or group program is limited in what it can offer people. Any kind of food service in a group setting has to be structured to meet the needs of staffing limitations and food safety issues.  This is why overall, other than treatment for the medical complications of eating disorders, I believe that ideally any treatment should be in the outpatient setting where it can be individualized and people can have more tailored one-on-one support from family, coaches, therapists, etc.

My story is below but I also wanted to add that other than my first hospitalizations as a child and after my last suicide attempt, every time I  pursued any level of treatment it was my choice, i.e. me desperately seeking help.  And often without any outsider encouragement — not even from my own family — so that made it even more difficult.

However, this is my story:

I first became sick in 1978 and was treated for my severe weight loss and depression in a paediatric ward of a general hospital in my home State.

I was briefly fed via an NG tube in order to coerce me into eating on my own, which worked.   After a few days I started to eat what was given to me.  I was also not allowed to see my family and that served as another incentive to start eating.  I was hospitalized again in the same unit a couple more times during my high school years.  

After my first hospitalization, I also saw a psychiatrist and started family therapy, but my family were not interested in being involved so it was not helpful.   I never felt that anyone understood what was going through my head around food and why I was so scared.  The only way I could cope was to start counting calories which I did quite religiously.  That way I was able to eat enough to stay out of the hospital but I never gained enough weight to go through puberty and stayed looking like a twelve-year-old even when I went off to college.   

The first time that I had anything like effective help was in in 1988 when I was away from home at college.  I saw a therapist who was quite perceptive and also read a book called Making Peace With Food, which was quite a revelation.  That was the first time where I felt understood in terms of my fears and what I would need to do to overcome them.  However, my weight was really low and I ended up going back home and then, in 1989 started my first-ever organized effective outpatient therapy, which included working with a dietitian and a therapist who specialized in eating disorders as well as participating in some group “psychoeducational classes”.

I finally gained enough weight to go through puberty, was able to go to nursing school and date and even got married in 1997.  However, I did not continue to do well and in 1998 I went to my first inpatient treatment program on the East Coast.  

This was both awful and somewhat helpful at the same time.  The food was basically dealt with through an exchange system but was limited to mostly healthy foods.  The only time we had treats, like say a doughnut, was once or twice for a special food challenge type experience.  The best things there were the art therapy and a sort of drama therapy which I found gave me some new ways of thinking about myself.

The next time I had inpatient treatment was in 1999.  This was actually one of the best inpatient programs I went to.  They had the goal of getting people to eat intuitively and we were definitely challenged to eat all types of foods and did lots of practice with eating out, as well as shopping in a grocery store and cooking a meal for everyone.  Once I even did this “unlimited” eating challenge experience, where I was to eat as much as I wanted from a buffet of all sorts of snacks foods.  We also had days when they would do things like have doughnuts for every snack, or breakfast foods for dinner, to help people break free from rigid rules around food.  

In this program there was also a structure for progression, where you had to move through different phases that involved required readings and homework assignments. They had a good variety of groups, including both art and music therapies, and also provided good experiences for our “leisure time outings” such as volunteering at a day care, doing a trust walk, going clothes shopping, etc.  However my time in both this program and the previous one was constricted by the fact that my insurance would only pay for a very limited length of stay and you had to meet criteria for being considered still at risk either because of your weight not being high enough or issues with other mental health problems, such as depression.  Therefore they would try to get you on medication and there was very much a short-term mentality of just gain weight rapidly enough so that it looks like you’re better. That might be why I also had an awful experience there where one day I just couldn’t finish the lunch meal in the allotted time; they had included a lot of veggies with a bean-and-sausage dish that was super filling.  I thought I was going to be sick and had to leave the table.  As a result I was forced to essentially plead and defend myself to the group in order to keep from being demoted back to a lower phase.  It just felt very unfair and traumatising, especially since I have always been super-compliant any time I was in any of these IP programs and tried my best to do whatever was asked of me.

Anyhow, my progress didn’t last.

In 2001 I returned to my home State (and the therapist that had helped me previously) for what amounted to a solo outpatient intensive program provided to me by her and a graduate student she was training. 

This student helped me with the eating side of things. 

It was good because it was very individualized and presaged a lot of the current thinking around set point theory and trusting my own hunger cues.  However I still was basically resorting to calorie counting and trying to keep every day’s intake and activity the same. But I didn’t want to stay in my home State, and when I left after about a year and returned to where I live now, things slowly fell apart again.

The next inpatient treatment program I went to was a very small residential program and I thought that was something I had not yet experienced. There were only about 7 patients at a time in a house-like setting.  This place had a good approach to food in that there was a cook for the main meals and we were allowed to choose and portion our own snacks from any available items.  We also went out to eat a lot, including being encouraged to face lots of scary challenge type foods and also did cooking for the group.  We also got weekly massages, which was lovely, plus some yoga and dance therapy.  They didn’t forbid all exercise but tried to make it more a social thing and connected to purposes other than burning calories.  The main problem with this program was that it was very new and the resident staff were not well trained in handling small group dynamics.  

This is something I hadn’t mentioned yet but in all of these inpatient programs one of the bad things is the competitive nature of eating disorders and how one is exposed to “bad behaviors” in others and can easily pick up new ED behaviours (eg lower level movements, purging, etc).  In this very small group, the “quality” and commitment of the other residents made a huge difference.  When I started there were some relatively committed, mature peers, but that didn’t last and the ones that subsequently “acted out” or subverted rules really negatively colored the experience for me.  I also have a lot of social anxiety and insecurity and feeling thrust into an environment where people are very competitive and suspicious —  it was just like being in junior high again.  I felt a lot of pressure to be popular and say insightful things and be liked by the others. I had to pay out of pocket for this program as my insurance didn’t cover residential care – so it was a big financial sacrifice and ultimately didn’t stay as long as probably would have been optimal.

Not too long after I went back to my home State again and ended up doing an intensive outpatient treatment program with a dietitian alone.  She had a tough love approach overall, and required that I join in on a 3 times a week small group dinner, where we would go out to eat or get take out.  This helped in that it was very individualized to me and she really understood the fears that would go through my head; it was basically exposure therapy.  But again, I didn’t want to stay in my home State so I only did this for about 6 months – leaving once I had returned to a healthy weight.

The last inpatient treatment program I tried was in 2009.  This one I have the strongest opinions about — probably because it’s the most recent in my mind. This was a program that really emphasized group dynamics & group therapy which I did not like.  It felt very threatening and coercive a lot of the time.  Again, when patients would act out or sneak in eating disorder behaviors it would become very disruptive to the whole group and the staff seemed to encourage a sort of “gotcha” mentality of shaming the transgressor into right action — instead of helping you address those things without feeling like you’re being punished or were deceitful and bad.  

This program also definitely pushed medications including wanting everyone to be on quite hard-core anti-psychotics.  

They required increases in our daily food intake for even the slightest increases in activity.  This meant that if we went to a movie or to church we were required to have supplements because of the extra caloric expenditure involved with going to a movie and getting in and out of the van.  We were not allowed to walk up or down the one flight of stairs in the main residence, and the staff were always chiding people for “excessive movement”.  I felt like I was in a prison, and worse, I found this approach only reinforced my fearful belief that one must minutely control food intake in relation to activity and that higher exercise activity was what justifies and permits eating more.  Their approach to food was an exchange-based system; we each had a total calorie goal for the day divided up into various numbers of fat/protein/ carb/fruit/veg exchanges per meal.  For snacks there was a limited selection of items; a few were more like “junk food”, eg. chocolate covered pretzels, but most of them were still relatively safe foods like yogurt and granola bars.  We did go out to eat about once a week, and they sometimes offered fancier desserts, but what you had was always planned ahead of time and they didn’t like it when people wanted to switch things around.  We were supposed to rate our fears and mood before meals and each pick a word to describe how we were feeling (this was called “meal time support”).  But I found that pretty useless; because of the schedule there really wasn’t time to talk about anything beyond the one word answers, and it was too big a group for any individualized help to be given.  

That also reminds me that all of these programs had time limits for meals, which I found oppressive.  I know that some people have issues with eating super slow and therefore it is important to work on resolving that.  However, when you are being forced to eat large amounts of food and only have 30 minutes in which to do it, it’s very unnatural and unpleasant; you can’t have a conversation or even try to learn how to enjoy the food because all you can do is choke it down as fast as you can.  This was exacerbated by the fact that in most of these programs you were required to eat “balanced meals” with fruits and vegetables often in quite large quantities.

I also forgot to mention that early on here, I was made to have an NG tube so that I could be supplemented overnight in addition to what I was eating during the day.  I was told that this was necessary because I was not gaining fast enough.  Again this was based largely on insurance requirements and financial barriers that limit the length of stay and put all the focus on how fast one is gaining as a measure of how much improvement and healing is supposedly happening.  So rather than having the option of more dense foods as part of my daily intake, their solution was to give me the tube feedings at night.  

Another one of the worst elements for me in general with these programs was just this feeling that the staff didn’t really trust me or believe I knew anything on my own about how eating disorders should be treated despite the fact that I was older than most of them and had definitely been through a lot before in terms of learning what did and didn’t work for me.

Finally, the last sort of inpatient treatment I had was in 2016 after I tried to kill myself with an overdose of benzodiazepines.  This was not my first suicide attempt, but it was the only time I was ever hospitalized.  I spent a week on a small inpatient psychiatric unit that was not for eating disorders but rather just for basically short-term stabilization of mental health crises.  Ironically this was actually quite helpful to me.  I just needed an escape from my home and work environments and  the downward spiral I’d gotten into. 

It helped to have limited choices in terms of food and activity and to not have to deal with work and to just try to regroup mentally.  The staff were actually quite wonderful and patient, and it actually helped that they didn’t closely monitor what I ate for the week I was there.  I was encouraged to eat as much as I could, but it was not their job to police me.  And I actually found it helpful to be with people who had others forms of depression and anxiety and see that we were struggling with fundamentally similar issues.  When I was discharged I committed to a contract with my doctor to gain weight as an outpatient; they had wanted me to go to another inpatient program but I refused. But with that threat hanging over me, I did manage to gain weight.  

I did and still do see a very wonderful therapist, plus my medical doctor is incredibly wonderful (she had anorexia herself and is both very knowledgeable and very compassionate).  I did also try again seeing an outpatient dietitian.  However I did not find that I could work with her very well.  She seemed to want to be my therapist even though I already had my therapist, with whom I am really close.  She wanted me to get away from counting calories and exchanges, but I couldn’t seem to find the bridge between that and the goal of eating intuitively.

Overall I would add that I was never exposed to the famine hypothesis in any of the treatment programs.  There was some discussion of genetic components and education around starvation and its effects, but these were not essential elements.  In hindsight, I would also say that in all of these programs there was the implicit expectation or message that there was one way of eating that was for gaining weight and another way of eating for maintaining your weight.  This only reinforced my fears that I couldn’t get used to eating as much as I ate in these programs and especially not what we had on challenges.  

There was also the implicit concern about – or at least no reassurance NOT to worry about – promoting “binge eating” and “emotional eating” — ie the goal was to eat “intuitively” but that meant a kind of eating still largely confined to when one was physically hungry and stopping when physically full…

Lastly I should mention that for decades I have had various forms of cognitive behavioral therapy in the outpatient setting.  

I also have had DBT therapy and I think DBT has a lot to offer that meshes well with combating the ED voice and tolerating distress and difficult emotions.  I have had some wonderful therapists, including my current one, and I am pretty sure I wouldn’t still be alive without them.

When I think about all I have been through in 41 years of illness, I can easily get discouraged and hopeless.  But last year I found the YouTube videos and Instagram posts of Tabitha Farrar and HatWillBeatThis, and it was like the sun came out from behind the clouds in my life and I could see a new path forward.  I felt like I might still have a shot at true recovery after all.  The truth is, I would give anything just to have one day where I can enjoy life’s simple pleasures without my ever present companions of guilt and fear.  And so I keep fighting to banish ED from my life for good…. and I hope my story will help inspire and guide others so ED won’t steal another minute from their lives either!

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To read other eating disorder recovery stories of incredible people around the world, please click here.

And to find out more about the petition to campaign for changes to the way eating disorders are treated worldwide, please see:

#ChangeEDTreatment Petition

If you have a story to share of eating disorder treatment – good or bad from any corner of the globe, please do contact me!

 

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