It is impossible to describe what living with an ED is like. I can only tell you what it is like to experience watching a loved one with a disorder. But I probably can’t really know what it is like for L. I see her consumed with pain and fear, I can tell the effort it takes to smile. I can imagine. But I don’t know.
And those outside are sympathetic and kind, but it sometimes feels as if we are living in a glass tank. Others peer in and stare. They talk to us and we answer. But the glass wall keeps them at a distance.
Today I went to L’s school, summoned to discuss her impending absence. She is about to enter Year 11. At some point early next term, a teacher will tell them that this year is the most important year in their school lives, as teachers tell pupils every year. But L will not be there. She will be in a psychiatric hospital.
The teacher in charge of L’s year wanted to talk to me about the logistics of L’s absence. She seemed uncomfortable. And then she dropped the bombshell. Perhaps if L was going to be absent for a long time, it might be best to withdraw her. Because then the local authority would have to take responsibility for her education. Because, you see, the school were worried that they might have to fund it. They have become an academy – one of the first under Gove. I remember the cathartic letter of complaint I wrote, objecting to the overtly political dogma espoused by the head and her glee at escaping from local authority control. The same authority on which they now wish to offload an anorexic 14 year old girl in case her education becomes too expensive.
I sit back. I smile, calmly. I thank the teacher for her helpful suggestion but tell her that No, I do not believe L would be best to withdraw from school. I tell her that L will get better, she will be back at school and that goal of getting back to some kind of normality will sustain her and help her. I tell her while I don’t understand the finer points of education funding, I am sure they will make it work. I remind them of all the wonderful things L has done in her time there, how she has been to so many parents open evenings, speaking about subjects, impressing parents with her maturity and intelligence. I am quite sure, I say that you would hate to lose her, even if this does mean a blip in funding arrangements. And as a final stroke, I say how we need to keep perspective, after all, L has an illness with a mortality rate equivalent to childhood leukaemia. What is funding compared to that?, I ask. And smile again, thanking them for their support during this difficult time.
The head of year colours around her neck, flushed with awkwardness. L’s form tutor looks at the floor and smiles to herself. There was a time once, when I would have gone to war on this point. But I don’t. This teacher sees the world in league tables, balance sheets and learning outcomes. I see my beloved daughter facing a daily battle with anorexia, with herself, with me and with the world. L’s anorexia is a word on a student record, a form to be completed and an inconvenience to the smooth running of the school. To us, it is a prison, in which we wake up each morning and navigate through another day until sleep sets us free for a while. She cannot possibly understand and I have no way of explaining it to her. We finish our meeting and I wish them both an enjoyable summer break and go back to work.