So what if you are Anorexic

“Are you very nervous, or is this your normal personality?” I asked after another clever interjection by her.

“I try to be happy all the time,” Mouse answered and I thought that it will be refreshing to have that attitude in the office.

At the end of the interview she said to me, “I am Anorexic.”

“So what,” I thought.

Little did I know what I was letting myself in for when I confirmed her appointment three days later.

Never had I experienced such a diligent and tireless worker as was Mouse in the office. Within a month she had taken over the complete administration of our office, including my diary and Petty Cash. It was just after her birthday, she was 25, when she confided in me that her accommodation was not ideal and could she rent a room from me in the house. Naturally I agreed and she moved in, with the understanding that we would not get in each other’s way and would live separate lives after hours.

The arrangement worked well for about two weeks then I noticed that she was not eating. Although there was ample food in the house she would not prepare anything for herself. When I casually remarked on it, she told me that she did not know how to cook; hence she only ate apples and drank tea. Alarm Bells; I started researching Anorexia on the internet. Imagine my shock and concern when I realized that anorexia is not just a fad or weight loss programme. I asked her about her support from her family and I was told that they did not support her at all and her illness was an embarrassment to them. Okay, now the choice was mine – send her back to the toilet and shower that she was living in before or try to help and support her. It would be no hardship to feed her as I was in any case preparing food for myself. After discussing her preference for food I became pretty much a vegetarian, which I did not mind in the least and I set about providing for both of us.

All went well, although she ate a minuscule amount of food, hence the name of “Mouse”, for about a month and then she started finding excuses not to eat. This deepened my research as I could see that when I broached the subject of her lack of nourishment she became very distressed. That was when I realized that I had embarked on a mammoth task. 

First off I had to learn a whole new way of speaking and NEVER use certain words or phrases for fear of sending Mouse on a raging path of self-destruction. I was now beginning to understand the reason for her diligence in the office. A trait of an anorexic is the ability to develop high standards, values and ideals. The slightest deviation from that self-determined level of perfection would totally unbalance Mouse and needed care and patience to bring her back to an acceptable level of functionality. One of the first lessons I learned from my research was to listen carefully and absorb everything she told me about her mental and physical experience of anorexia.
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Slowly, slowly catch a monkey

Koos Myburgh | Create your badge

Slowly, Slowly Catch a Monkey

When Mouse was 16 or 17 she already had Anorexia, but only went to hospital when she was about to die. Apparently the doctors at the hospital only expected her to live for a few days when she was admitted. Her treatment was, from what I am told, a little archaic. She was put on drips and fed copious amounts of food for three weeks and released. The early days of her Anorexia are a bit vague and I will not delve into them, as nobody talks about it. I will also not express my opinion on the reason for her illness as all I know is hearsay.

Mouse April 2004

Slowly, Slowly catch a monkey!

This was something that I repeated to myself a thousand times a day because, although I am patient and compassionate, I tend to be impulsive and don’t always think before my lips part and thoughtless words sprout forth. I would say something like; “Hey you’re looking pretty today” and the normal retaliation would be; “Am I getting fat? That’s it, I am not eating anymore” I would then have to choose my words very carefully to convince her that what she perceived was not my meaning. It was at times like these that I realized that I was dealing with two different people. We decided to call the Anorectic person “Monique” which is her real name. Monique is a very self-centered, nasty antagonistic person for whom it is difficult to feel affection, whereas Mouse is the complete opposite. Mouse has a heart of gold, willing to please, hardworking and lovable. It is very difficult to imagine those two personalities living in and sharing one body and one brain.

I learned that anorexia is not always only about losing weight, it is about having control of something. Often girls who have lived in an extremely dominated environment become anorexic because their eating is something that nobody else can control. I started giving Mouse more responsibilities around the home and allowed her to carry them out at her leisure and in whichever way she felt fit. Even if things were not done in the conventional manner, it did not matter; she just needed to feel that whatever she did was totally under her control. Sadly, this obsession for control results in the anorectic becoming very focused on the control and will not deviate from their perceived idea of control. As in the case of “controlling” their eating, they do not see that they actually have no control, but are being controlled by anorexia. Because of this distorted perception of control it was necessary for me to implement guidelines in the shopping as gently as possible without her feeling that the ‘control’ was being taken away from her but still leaving the decision-making to her. That little exercise took all of about two years which gives one an idea of how long it will take to change an anorectic’s perception of ‘controlling their eating’.

Eating is just one aspect of an anorectic’s need of control. Another aspect is the need to exercise. Monique needed to burn up any calories that she consumed. Unfortunately she confuses calories with Kilojoules and tried to burn 3 to 4 times more calories than she consumed. In an effort to monitor her amount of exercise I started exercising with her. We would take the dogs for a 5 to 6 Km walk everyday with which she coped with very well. Slowly she tried to manipulate me into doing more and eventually I invested in 2 bicycles and we started cycling. Only about 1 Km a day initially and slowly progressing to about 7Km. In the meanwhile we reduced the dog-walks by the same amount which we cycled.
If you want to learn more about anorexia sufferers

Twelve Months

The amount of exercise is always negotiated with Mouse as it is impossible to reason with Monique. She also has a mini-stepper which she utilizes while watching TV – normally for about half an hour at a time – twice a day. In the beginning, if I did not watch her she would have stayed on the stepper all day. Apparently she had a treadmill when her anorexia first started that she used at home without supervision.

Twelve Months

The next twelve months is an experience I would rather never happened. We are still unable to establish what started this sudden refusal to eat. In an effort to entice Mouse to eat, I would take her to movies on a Friday evening with the understanding that we would go out for something to eat. Sometimes we would share a very plain Pizza and she would eat about a quarter and sometimes we would share a Toasted sandwich. Since this was her only 'meal' of the week, I found the Pizza place which made the biggest and a coffee shop whose sandwiches filled the plate. In the meanwhile she would occasionally spend an hour eating half a savoury muffin at home. It was critical that she was not around when I made the muffins, because the sight of so many ingredients would cause her total panic. When she saw the different things that went into making muffins, she imagined that she had to eat all of it at once which threw her into a frenzied panic. A very apt description of this behavior was penned by a late 19^th century neuro-psychiatrist, Charles Lasegue, as 'hysterical anorexia' when he recognized the emotional turmoil of patients suffering from anorexia nervosa.

On a number of occasions when she had not eaten for two or three days, I would suggest that she goes to an institution for help. We even made an appointment and traveled 1700km to visit a world renowned facility. She met with the resident psychologist and dietitian, was shown around the place and the treatment was summarized for her. Although she said that she would be comfortable there, she indicated also that the timing was not right. She did however promise that she would go there when she felt that she was ready. Recent studies have shown that Anorexia Nervosa patients over the legal age of 18 who have been ill for more than six years defy all treatment interventions. I was becoming more and more concerned about Mouse and tried all manner of persuasive ways to make her eat. 

I started introducing her to vitamin and mineral supplements as I could see that her whole system was degenerating. We could only compromise on her taking tablets even though she feared that the intake of vitamin tablets would 'make her fat'. Such is the morbid fear of becoming fat, in an anorectic. 

There were times that I had to walk away from her to compose myself before carrying on with a conversation. It hurt me to see this beautiful young lady committing slow suicide. I could not reason with her on any matter as she retaliated in a way that made me feel responsible for her illness. On these bad days when 'Monique' put in her appearance, there was nothing which I said or did which gained her approval. Mouse once said to me that Anorexia is stronger than what I am and that I will NEVER win against Monique. There were days that I felt convinced that she was right but fought hard not to give up. Sometimes I had to endure uncompromising verbal abuse from her and I had to remind myself that I was dealing with two very different personalities.

For more on Anorexia

Resistence

After another harrowing outburst over an insignificant issue by Monique, I took her to a doctor for evaluation and he referred her to a psychiatrist. I took a very apprehensive but positive Mouse to her appointment but left there with Monique raging and swearing never to return for another appointment. On that day we had planned to have a 'smoothie' at a local franchise restaurant as reward for her keeping the appointment. Upon arriving at the restaurant the conflict in her brain totally derailed her. She no longer wanted a smoothie because it would make her fat. She would have coffee but she really felt like having a smoothie. She wanted to have a take-away coffee so that she could drink it in the privacy of the car. If she was going to have a coffee where nobody would see her, the 'diet police' will not notice if she had a smoothie instead. After about a half an hour of conflict and discussing her options, she decided on a take-away Cappuccino. While we were leaving the Mall, Monique once again reared her nasty little head and said that she would not drink the Cappuccino. By this time I was overcome by frustration and as we walked past a rubbish bin, I dropped her cup into it. Well the look of indignation and ensuing tears at having lost the Cappuccino that she was so looking forward to brought Mouse back and left me feeling very bad.

We went to that same restaurant everytime we were in town, for coffee and occasionally a Muffin. Sadly every time it was the same conflict that was triggered there. To say that it made me uncomfortable would be an understatement but I needed to encourage Mouse to eat and show her that she would not put on weight if she ate sensibly and healthily. Not that I could use the word 'healthily' but I tried to get it across as best I could. Sadly the waiters were not trained to cope with people suffering from eating disorders and eventually, to prevent further scenes in public with Monique we stopped visiting there. After leaving the movies one Friday evening we stopped in at another popular franchise for coffee and found some really delightful waiters there. This then became our favourite spot, we even befriended some of the staff and became friendly with the owner, who used share her aspirations for the shop with us regularly. After an incident with one of the waiters who made a thoughtless remark and was chastised for it, the place became a haven for all three of us, Mouse, Monique and myself. We were able to sit there and discuss the order of the day without feeling that we were being watched or pressured into a quick decision. I would often sit and have an Espresso while we discussed what Mouse was going to eat or drink. The lease on the franchise came to an end and the owner, wisely, decided not to renew but to convert to her own very successful Coffee Shop and Snack Bar.

Mouse used Monique to manipulate me into always giving her what she wanted. The nearest town of any significance is 70Km away and whenever Mouse wanted to go there, Monique would suggest we go for a 'meal'. Once there Mouse would disappear into oblivion and I would be left with Monique. If we were going to have something to eat she would have a panic attack while we were discussing the menu. This panic attack would disappear as soon as I agreed that we would just go back home after a cup of coffee. It was very frustrating not to have the right words to say in order to convince Mouse that the food she would be eating will not make her fat. All I could do was watch as this girl was slowly being tortured to death by Anorexia. Mouse had now lapsed into a total abstinence of food. She would only drink coffee but fortunately she did not stop the vitamin and mineral tablets. When the situation between Monique and I became too tense, I would give her some calming tablets which eventually subdued her and peace would once again reign. I had to be very careful not to allow her to progress to subscription drugs because I do believe that I would not have been able prevent her becoming addicted. I therefore looked for all natural supplements and tranquilizers.

I was always very pedantic about her not neglecting her family by ensuring that she visited her parents regularly and stayed in contact with her sister and brother. When we visited her parents we always timed our arrival to coincide with them finishing a meal, we would then only be obliged to have a cup of coffee or tea with them. In that way it was possible for Mouse to hide the fact that she was not eating. I learned very early that it was not worth speaking to them about Mouse's disease as they did not understand and were quite harsh on her. After about three months of not eating I became very concerned for Mouse and asked a family member to speak to her explaining that she was losing too much weight and that her health was at stake. The result was not what I expected given that, by that time the family had been aware of her disease for about six years. It went something like this; "You must stop this crap of yours now. You are being selfish and just making everybody worried about you." By now malnutrition had perpetuated amenorrhea in Mouse and she was developing a degree of hypothalamic dysfunction as well. On the warmest of days she would wear long pants and sweat jackets as she was always feeling cold. Although amenorrhea could be the result of malnutrition, it is not the only cause, neither is it a given that all anorexia sufferers will develop amenorrhea. I was now beginning to fear for her survival; according to ongoing studies the mortality rate of anorectics is as high as 10% to 15%. Further studies show that as little 25% to 33% of anorexia nervosa sufferers completely recover. All in all, the prognosis was very bleak.

2006

Everytime we seemed to be making some progress with Mouse's frame of mind someone would attack her or say something inappropriate which would result in having to retrace at least three weeks of work. Mouse started visiting a psychologist once a week which assisted me a great deal as she was able to convince Mouse that I was not the enemy. We progressed to the point where Mouse even went to see a nutritionist. Unfortunately, there was way too much talk about food in the interview and Mouse came away from her totally bewildered and never went back. She continued seeing the psychologist for about four months and then felt strong enough to go to the Rehabilitation Center which we had visited about eighteen months earlier. We made an appointment, packed our bags and set off again on another 1500Km trip. When the nutritionist at the center calculated Mouse's BMI we were told that it was too low and she needed to go to an institution for mental diseases and return to the center when she had gained some weight. That idea did not sit well with Mouse at all and we returned home, having achieved nothing but a long tiring trip and a very happy Monique who didn't stop gloating all the way back home.

Caring for an Anorectic – Trying to keep up

At the end of the nineteenth and start of the twentieth century anorexia nervosa was rarely diagnosed which does not necessarily mean that the incidence of the disease was nigh nonexistent. The dress code of that era determined that women wore dresses covering the body from the neck to below the ankle thus hiding many flaws in their anatomy. By the end of the century the diagnosis of this disorder had reached an alarming 0.1% of the population of industrialized countries. Studies have shown that only 2 to 3 out of 10 patients with anorexia nervosa recover completely. A further 1 to 2 out if 10 will die from the disorder, which makes Anorexia Nervosa the Psychiatric disorder with the highest mortality rate. Although much research (DSM lV, Diagnostic and Statistical Manual of Mental Disorders) was done during last century no definite consensus was reached regarding the critical diagnostic criteria for Anorexia Nervosa. A draft proposal for updated criteria for the diagnosis of Eating Disorders has recently been published for revision and it is hoped that a final publication (DSM-V) will be released in 2013.

2007 Just before the onset 12 months starvation

When I realized that Mouse could not process compliments and always interpreted them as being fat, I would cringe whenever anybody said something good to her. It used to stress me and I would try to avoid any situation where she would be subjected to any positive remarks about her appearance. Realistically, many who do not know what an anorectic going through, mentally, who do not speak their disorder language will unintentionally set off a trigger. It is very hard for Mouse to accept that these "triggers" are a reminder that her perception of her own body is totally different from what everyone else sees. Intellectually Mouse understands that but the Anorexia will not allow her to accept it.

Fortunately I soon realized that my role here was not to heal her but to support her when she spiraled out of control and allowed Monique to take over her life. She needs to know that she can talk to me without being judged. A desire to succeed and be perfect is what drives anorexia. There are times when I cannot deal with it and get very frustrated at the thought that Anorexia is bigger than I. Although I try not to show her my disappointment, frustration and pain, I know that I sometimes fail. Mouse cannot deal with me showing signs of weakness and it leaves an opening for Monique to take charge. After dealing with Monique's abuse, bad mouth and uncontrolled anger, it takes a day or two for Mouse to resurface and take control of her life again. These episodes of Monique have, over the past few years become fewer and shorter. She is managing to suppress Monique much quicker. Unfortunately it does not mean that she has overcome her fear of eating and gaining weight, a constant battle when she wants to be healthy but she doesn't know how. When others compliment her, I try to rephrase their comments for her to see that, looking healthier, does not mean looking fatter. It is very difficult to convince her that many thoughtless remarks are the truth and sometimes she needs to walk away and cry if she needs to but she must not be consumed by the comments.