Eating disorders: the patient's perspective
- Aust Prescr 1998;21:103-5
- 1 October 1998
- DOI: 10.18773/austprescr.1998.098
Sometimes, people with psychological or psychiatric problems are viewed negatively by the community. For example, people, including health professionals, can be rather pessimistic about anorexia nervosa. To help overcome some preconceived opinions, it is sometimes useful to consider the patient's view.
The Executive Editorial Board of Australian Prescriber is pleased to present the personal experience of Kate Carnell, the Chief Minister of the Australian Capital Territory. While her experience is typical of many patients with anorexia nervosa, her success as a pharmacist and in politics shows that eating disorders can be overcome.
To emphasis that this is a personal view, the Editorial Board has decided to publish an unedited transcript of the responses to the questions posed by Australian Prescriber.
A personal experience
Kate Carnell, Chief Minister, A.C.T., and community pharmacist, Canberra
AP Why did you want to be thin?
KC I got anorexia when I was in grade 8 at school. I was probably about 13 at the time. It's hard to look back and remember the reasons why I wanted to be thin, but I suppose a lot of it was to do with peer group pressure being fashionable, being popular with friends and boys, and so on. But the thing that frustrated me most about being overweight was that I wasn't controlling my life as much as I should have been.
AP To what extent did external pressures contribute?
KC Teenage dieting, particularly amongst girls, is the norm. It's hard to find a teenage girl who is not on a diet, regardless of whether they're overweight or not. Looking back, I think it is very important to ensure that teenage girls who start to lose significant amounts of weight are looked at or treated early to determine if there is something wrong or not. By the time it was perceived that there was anything really wrong, I'd lost a lot of weight and I suppose the somewhat strange behaviour patterns that go with anorexia were ingrained.
AP How long was it before you recognised you had a problem?
KC It took a long time to realise that there was something wrong. For a long time, people said 'you're looking great, good on you, the diet's working well', so I had a lot of 'positive' reinforcement for quite a long time. To a large extent, I think some of the problems with anorexia are that when you start getting sick, people reinforce the behaviour by congratulating you in effect, congratulating you for being sick. So it's not until you are really a long way down the path to being seriously ill that anybody realises that there is a problem.
AP What made you accept that you needed treatment?
KC I realised that this wasn't terribly normal when eating could never be a pleasure, when it was literally impossible to sit down and have a meal, even with my friends. I suffered from headaches all the time, I felt sick all the time, but, like most anorexics, I was obsessive about exercise. I was tremendously fit and playing first grade tennis through much of the time that I was sick. But when it got to the stage of hiding food and really not behaving rationally at all, I realised that my behaviour was not normal. But that didn't mean that I wanted treatment because I still liked being thin.
It was when I realised the effect my behaviour was having on my parents that I think I realised I probably did need treatment. I got down, at my worst, to around 30 kilos, which is pretty thin, but it wasn't until I was under 40 kilos that I really thought of myself as not fat.
AP How did anorexia affect your life and those around you?
KC The thing about anorexia is that it affects everyone else in your life, at least in the early stages, much more than it affects you. And there's a cyclic problem. Because nobody can understand why you can't eat, particularly parents and friends, they get frustrated, they get angry, they try to make you eat and of course that makes you worse and more screwed up about the whole issue of eating. Your whole life is based upon people trying to make you eat and you working out ways to avoid doing it.
AP Can you describe your feelings, e.g. about body shape, when you were unwell?
KC What's really interesting looking back is just how warped my own views of my own body shape were. When I first started to diet, there's no doubt that I was a little overweight plump but obviously once I was down to 55 kilos and under, I was no longer overweight. But even when I was under 40 kilos 35 kilos it still didn't really dawn on me that I was no longer overweight.
AP How can health professionals help?
KC I think one of the most important things that one particular doctor in hospital made me do was stand in front of the mirror a full length mirror and look at myself for a reasonable period of time because there was no doubt that I looked like a famine victim. And it was probably not until that time that I was forced to come to grips with what I looked like that in fact it was ugly.
With regard to getting better, I think one of the most important things to do, as much as I didn't think so at the time, is to get body weight back up to a reasonable level, regardless of how it is done. I know there are many treatments for anorexia, but I don't think you can deal with any psychiatric problems until you can get body weight up to a level where it is no longer life threatening. It's interesting that, when you get body weight under a certain level, you are no longer hungry, ever. There's no requirement to eat, and I think it's important to really get body weight up towards normal levels before it's really possible to come to grips with some of the issues such as sense of self, your own self-esteem, and so on. I do believe that, where someone suffering from anorexia won't eat, it is important to force the issue and not just let it keep going.
AP Do you think health professionals need more education about anorexia nervosa?
KC I had quite a number of stints in hospital before I got sick enough and everyone else got desperate enough to really force the issue. Again, I think a large amount of the problem for me with anorexia was that nobody knew much about it, and it was the lack of understanding that contributed to the problem. The sort of view that 'of course she can eat all she has to do is open her mouth and chew', `she's just doing this to get attention of course she can eat, anybody can eat'. And of course when you have anorexia you can't eat for whatever reason you simply cannot do it it is impossible. But people generally can't understand it and, looking back, I find it hard to understand myself. But I can remember that it was impossible just physically impossible to do it.
AP How do you feel about your treatment?
KC I think at the time that the treatment I had was successful, but it was also destructive. I was on a lot of psychotropic drugs. I was on quite high doses of chlorpromazine at the time. I understand that sort of treatment is not used any more and I think that's a good thing. But I was one of the lucky ones who managed to get better over quite a short timeframe admittedly a couple of years, but not the 10 years or more that some people struggle with this illness. I suppose in some ways I was lucky that I got so sick, because there was no choice but to aggressively treat my anorexia. For those who don't get to such a low body weight, the treatment may be avoided and the problem continues.
AP How can health professionals improve their communication with people who have anorexia nervosa and their families?
KC One of the things that could have been done better was the provision of better information to my parents and other important people in my life. I don't think that they were well enough informed, at least in the early stages, about what anorexia was and I think the huge amounts of blame that they felt actually exacerbated the whole issue. It made them feel guilty and therefore less able to deal with the situation. Of course, it had nothing to do with their parenting skills at all.
AP Are patient support/self-help groups likely to be helpful?
KC To be able to talk to other people maybe not to people who are suffering from anorexia, but people who have been through it, I think would certainly have helped me at the time to realise how serious it was. I certainly never wanted to die or end up brain damaged it just never dawned on me that could happen and maybe, if I'd had more of a chance to talk to others, it would have helped me and my parents.
AP What advice would you give to teenagers who (incorrectly) believe they are overweight?
KC For me, the most important thing about having had anorexia is that it did help me to come to grips with a lot of issues about myself there's no doubt that I'm a perfectionist and you can push that too far. The message to teenagers generally is that diets can and do get out of control. If what starts as a diet to lose a couple of kilos ends up being a diet that sees you lose 10, 15 or more kilos and the weight keeps coming off, don't do what I did and think this is fantastic, this is a successful diet. You need to seek help before it causes real pain to a lot of people in your life who don't deserve that. It can also cause real long-term health problems right through to death or brain damage and I don't think that is what any teenager thinking about a diet wants.
AP Any other comments?
KC I think it's probably better to step in early and treat a couple of people who don't actually have an eating disorder, but have just lost a lot of weight, than to miss people who have a real disorder and may end up in hospital with real long-term problems. The trick, I believe, is to treat early and that sort of early intervention should be based around self esteem, proper body image and a realistic appreciation of body shape.