Please, just eat.

Eating disorders are eating my family right up.

As mental health problems go eating disorders are not the ones to get. I’m not saying that depression, anxiety or even illnesses such as schizophrenia are in any way easy to deal with. But eating disorders have the highest rate of death among all mental illnesses and right now that’s a statistic I could do without knowing.

My daughter is just five years old. It’s very little. She’s littler than normal because she won’t eat. Let’s be clear, she has never been a massive foodie, but when she was younger she was a normal kid. Ate enough, was at the low end of the standard weight range, ran around and played. Normal. Then at 3.5, two years ago she crashed.

It’s not anorexia like everyone tells me. I have researched enough about eating disorders to know. It would be described as selective eating (selecting to not eat enough or sometimes nothing at all as far as I can see) or the brilliantly named ARFID (avoidance/ restrictive food intake disorder).

This is an eating disorder where sufferers cannot tolerate the idea of food. My daughter will literally gag if food is so much as put in front of her. The thought of eating terrifies her that much.

I have heard it described as expecting you or me to eat rocks- food just doesn’t look like food to people with this problem. Eating is a chore. It is not related to body dysmorphia, it’s just that these people cannot handle food. Sufferers eat a limited range of ‘safe foods’. This might be ten or eight or just two foods. When anxiety levels rise they feel able to eat less and less. The ‘safe food’ list might contain just one thing. It might drop to none.

In our house what it basically amounts to is that my daughter generally eats enough to maintain her body as underweight. Skinny but alive and able to get on with life, for the most part normally. Sometimes if things go wrong, or she’s feeling stressed or something else has changed that she’s not comfortable with then she eats barely enough to maintain a sparrow.

For a few weeks now she’s been existing off about 200–300kcals a day. It’s becoming more difficult for her to drink. She’s so thin that her outline is basically her skeleton and her flesh hangs like an old lady’s. But I believe we’re coming to the end of this cycle. This cycle will be stopped by paediatricians who will take her into hospital. Of course this has happened before.

Normally once she realises she’s got to stay in hospital, she knows she has to make more effort to be able to get out. The one-to-one 24/7 care that the hospital environment offers, with either her dad or me with her all the time, allows her to calm down a bit. She eases up a bit and begins to eat. Not much, but eat.

The other option is a tube feed. I don’t want my little girl to be tube fed. The standard method is an NG tube, fed up the nose down the back of the throat and into the stomach. I’ve heard stories that this hurts like hell when they insert it and you have to be awake to stop you choking on vomit if you’re passed out. People will stare at her and she will become even more weird than she is already. Disability of any form is not something we appreciate in our society.

It will plump her up though and bring her mental health back. She’ll stop crying so much, she’ll stop being so tired and moody and manipulative and anxious. But it will also stop her needing to eat. She’ll lose the connection between putting food in her mouth, chewing and swallowing food and feeling better. She’ll no longer need to eat and then it’s back through the cycle we go.

Right now I’m clinging on to the hope that this is going to autocorrect any time now. I can’t see a solution or a way out of this for us. I don’t know if anyone has found one.