Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.
50% is a very high relapse rate. Very high. It is therefore their recommendation that such a person not be returned to their sport -- typically running, but not just running -- after successful remission. Ever.
This is a tough recommendation to make and one that is often not received well at all, and not only by the patient. In the case of young patients, parents can be as invested as the child is in sport and exercise. (“Running is what she looks forward to” “it’s her stress reliever” “it’s her main source of self-esteem”, etc.). In some cases, academic scholarships can depend on it. Hard to argue with all that…. and yet, let's think what’s at stake: an illness with a ten percent mortality rate. Children really do die of this disease. Far too many, in fact. If you have had the wrenching experience of standing next to parents who have lost their child to anorexia nervosa, you will be humbled … and terrified.
I remember a boy, about 17 years old, whose mother brought him to me for an assessment. They were late to the appointment because he had to “go to the bathroom” just before. When he did not emerge from the bathroom for a long time his mother became concerned and finally went in. She found him on the floor, tears streaming down his face, doing push-ups and mumbling “eighty-five, eighty-six…Mom…please stop me…please help me stop.”
I remember a day I was giving a lecture to the medical students about eating disorders. The lecture room looked across a courtyard towards the windows of the pediatric wards. One of the residents looked up and cried out: a young girl of fourteen could be seen doing desperate jumping jacks in the window well after the nurse had cleared away her meal.
Every clinician who has evaluated patients with severe eating disorders knows how confused parents can be when told how ill their child in fact is -- despite obvious warning signs such as bradycardia, wasting, social isolation and even fainting -- because only the day before they were running around playing soccer, training for a marathon or competing in gymnastics. “If she’s so sick” the father of a young woman -- with a BMI of 15, terrible wasting, and a heart rate of 38; in other words very dangerously ill -- asked me once, “how come she was able to run with her track team yesterday?”
The answer is, you are able to function until suddenly you are not. You’re driving along until you run out of gas…and with a broken gas gauge, who’s to know?
And if your cancer doctor told you that you could increase your cancer’s chances of relapse to 50% from less than 10% if you did “X”, would you do X? Would you allow your child with cancer to do so?