I have been underweight most of my life, I've only had a couple of years of adult life at a healthy weight. Mostly, since the start of my teens, I've had a BMI of around 14 or 15, but for some time my BMI has been as low as 10. Even compared to anorexics, my weight is incredibly low. But I'm not anorexic, and I eat far more than most anorexics do. I have incredibly rare physical health problems, I spend most of my time in hospital. My weight is low because there are many things wrong with my digestive system. And possibly with my metabolism, because I can eat well over 2000 calories a day and do no exercise (e.g. when in hospital recovering from surgery, in bed all day) and lose weight. I don't have a distorted body image.

I've joined this site because for as long as I've been sick, doctors have been determined to diagnose me with anorexia. Because my illness is so rare (a unique genetic condition) they have no understanding of it, and insist a teenage girl, then a young woman, so underweight, must have anorexia, because that's the only thing they can get their heads round that doesn't make them have to face the limitations of their knowledge. I've been forced into in-patient and out-patient treatments for eating disorders many times.

But I am paranoid about eating, because eating makes me sicker. I recently spent several weeks in-patient, and the doctors made me eat more and more, until I finally gained some weight. Then my intestine blocked and perforated, and the surgeon who carried out the emergency surgery said it had happened because of all the food they'd been making me eat - my digestive system couldn't cope with it. So I underwent major surgery, with a BMI of 10, but managed to survive.

I left hospital "against medical advice" - the surgeons were so pleased I recovered, and discharged me, but the nutrition consultant refused to agree because of how low my weight is - and now I have to be weighed once a week by my doctor. If I lose weight, I will either have to go "voluntarily" into hospital, or they will section me. But I know eating so much is just making me sicker. I'm also eating around 2500 calories a day, including lots of junk food, and I've lost weight this week. This is how I ended up on this forum - I was researching water-loading, because I can't think what else to do. I'm scared of eating too much, and I feel like they've given me an eating disorder from so many years of treating me as if I have one. I'm obsessive over food and what will harm me and what won't, and what will keep them happy by upping the number on the scale and what won't. I just hate how they control me and force me into hospital and I don't understand why so many doctors are so incredibly eager for me to have a mental illness. I get weighed tomorrow, and I don't know what's going to happen.

Because my illness means I am going to become progressively more disabled, I don't fear being underweight - my health is screwed whatever weight I am, I could be the perfect normal weight and I still will not have a normal life.

Does a food phobia amount to an eating disorder? When I try and manipulate the number on the scale, is that an eating disorder behaviour? They tell me I must have an eating disorder, because otherwise I'd be frightened of being a low weight. They think that because I'm nonchalant about it, I must be mentally ill. But I'm frightened of eating something wrong. I'm so confused, and so tired.