Which option would you take?

Dear Doctor, I would like to give you my views about certain regimens used in treating people with anorexia nervosa. I have been a sufferer for over seven years, since I was 13. Ironically, both my parents are general practitioners and their concern and worry were exacerbated by a feeling of inadequacy at being unable to cure me themselves. Our plight as a family (my elder and younger brother included) was not improved after I agreed to undergo one particular treatment when I was 15. In fact, it has taken both me and my parents many years to put that destructive episode behind us. It is only now, five years later, that I am able to express my anger at what amounted to a kind of brain washing. With hindsight I can question the reasons behind this demeaning regimen without having to accept the word of a professor.

You may be curious as to what this treatment involved. Initially the programme began by shutting you in one room (a cubicle) and feeding you on 3000 calories a day until “target weight” was reached. “Target weight” was a source of great resentment by all those undergoing this treatment. It was simply the average weight of anyone your height and age. Because I was 1.7 m, my target weight was deemed to be 62.5 kg--a daunting prospect from the word go. Other factors, such as build, family tendencies, and previous experiences were ignored.

My home for the next few months was a room with windows all down one side, giving the effect of a museum exhibit case. The only way of escaping gaping stares was to draw the curtains, but as these were on the outside of the room it would cause other more deranged patients great amusement to whip these open. Besides, we were permitted to draw them only when we washed or used the much loathed commodes. Visits to the bathroom were forbidden (save twice a week) and we were confined to wash bowls, brought three times a day, and the use of a commode, which was emptied only when the student nurses failed to find more pleasant tasks. The fact that getting dressed each day was also forbidden only added to the humiliation.

If you had to leave the room for any reason, such as to use the telephone, it was necessary to shout for someone to push you, while you sat on the covered commode to prevent your legs from so much as taking one step. Unfortunately, if the commode had not been emptied recently the contents would splash on to your feet, adding an extreme feeling of revulsion to the degradation and shame already being experienced as this pyjama clad spectacle was wheeled to its destination. What possible purpose could this cruel and humiliating treatment serve? Surely walking a few steps to a therapy session or telephone would have no effect on subsequent weight gain?

The theory behind this extreme lack of independence was that we had to suppress any anorexic tendencies. Unfortunately, this seemed to include a total disregard for our basic human instincts and an obliteration of our privacy and pride. Ironically, the fact that we underwent this treatment in a room with an open window and a rubbish bin seemed to go overlooked. In preventing the patients from using any sophisticated techniques for the removal of food, the most obvious means were left unguarded.

After a four week period of such treatment a few therapy sessions were tentatively included. These consisted of group therapy as well as individual sessions once a week. Family therapy was delivered if it was deemed appropriate. In the meantime, meals were delivered punctually on a tray, weighing was carried out twice a week, and any activity, such as making your bed or standing at the window (as opposed to sitting or lying), was forbidden. To say that the days crawled by would be an extreme understatement.

The moment you weighed in at your target weight, however, you were moved on to the psychiatric ward for a further eight week reintroduction to the outside world. After a hellish period of private metamorphosis, this emergence was terrifying. To exhibit and clothe this uncomfortable, unfamiliar new body was very traumatic.

I did reach my target weight under this regimen, but at what cost? The anger and bitterness I felt after this humiliating treatment exacerbated rather than lessened my illness over the years to follow.

I found the ferocious generalisation as to the cause of the problem frightening. We were persuaded to believe in supposedly brilliant new theories without being given any credit for being individuals with differing anxieties and ambitions. Thus the process of delving into your family life and childhood was moulded to fit this idea of a common cause or causes of the problem. Much time was spent looking into the past and criticising the whole family set up, hence destroying any lingering self esteem; moving forward became confusing and impossible. I now see the psychological explanations for my problem to be a complete sham. I feel angry at being persuaded to believe such unhelpful complicated nonsense at a time when I was vulnerable and begging for help. The most hurtful part of the treatment was the fact that I was stripped of all my better points along with what was perceived to be the problem. It seemed to be considered that any part of the treatment, which would surely have been unbearable to any sane human being, seemed intolerable to us only because we were ill, and it was the “illness” that made us wish to rebel. Because we were so desperate to escape the grip of the anorexia, we silently but miserably stayed in this harsh regimen, believing that what were in fact perfectly normal and understandable emotions were wrong and must therefore be repressed.

How is the success of a treatment measured? Is it weight gained at the end of the hospital period, the length of time for which weight is maintained, or the patient's mental wellbeing?

I am writing this letter five years later in the Russell Unit of the Royal Free Hospital. Here I am treated as an individual. Each programme for recovery is tailor made after discussions with the patient. Help is designed to enhance your good points and to provide support in challenging the destructive manifestations of the illness. The aim is to build on what has led you to seek help in the first place, rather than to strip you of your self esteem and remould you to fit a psychiatric model.

It is difficult to judge progress in this rather complicated disease, but I do feel that for the first time I am in partnership with people who are working with me rather than against me. Weight gain is taken one step at a time without setting ambitious target weights. You are fully aware of the minimum medically safe weight which you should be aiming for. How this is achieved is up to you but advice and encouragement are freely available from those around the unit. Once forward motion is being achieved every effort is made to maintain that momentum.

The comparison I have made between these two approaches can be likened to a dentist examining teeth. On the one hand, I have all my teeth removed and replaced with an ill fitting set of dentures. On the other hand I have a caring and detailed examination of each tooth, with the aim of preserving the good teeth while attempting to stop the decay in the bad teeth.

This letter is to ask those of you who may have patients like me to fully consider the long term consequences of the treatment options available to you. After all, which option would you take?

Yours faithfully, An anorexic patient