In mental health, as in no other branch of medicine, there is much talk of being ready to recover. Patients are asked if they want to get better. I suppose that in some ways if the disease is of the mind, then your mind needs to co-operate in the process. But no one ever asks a cancer patient if they want to get better. True, treatment can be refused and I have known people turn down further treatment in favour of palliative care. I am conflicted about this whole area of medicine. If a patient turns down medical treatment for a degenerative disease, because it is too painful, and asks for the option of the condition being managed until they die, there is an understanding and sympathy. But if a person asked to end their life due to the pain of mental illness, we would be horrified. I am appalled, just thinking of L even coming close to that. But she is nonetheless in pain and the medication of food causes her real distress.
So, if an ingredient is that the patient wants to get better, is that it? For an eating disorder, no. I am sure L wants to get better, but that this involves gaining weight terrifies her. I realise now that the treatment she had in hospital was great, but the return of control over food was set too low, at a BMI of 16, and realistically, she was never going to do it. While her team and I disagreed over this, Ed had places to hide, while we argued with each other. When her father allowed L to come to his house and eat soup for supper, Ed had refuge from any challenge to their authority. On the occasions when C made supper, Ed could lie about food and during days at school, Ed could tell L to lie, to throw her food away and restrict, telling her she could make up for it later.
So, yes, L will have better chances of recovery if she wants to get better. But it isn’t necessary – how ironic would it be if the only way we could get better from mental illness was to wish it so, but to be held back by our poorly functioning brains? Having had two successful weeks, these are my essential ingredients:
1. I needed to want her to get better, enough to challenge myself to endure months of conflict. My love and affection for her will not make her well. I needed to commit myself to the long haul. Realistically, this was always going to be a challenge, so the second ingredient is-
2. Unity amongst all her carers. This is no time to want to be the perfect parent. Not knowing very much about food or calories is not an excuse. Give up any thought about being the popular parent or that you deserve a night off anorexia. A month’s work of effort can be undone in a night back in Ed’s grip.
3. Unity with her therapy team. As the mother of an anorexic, you probably give yourself a hard time. Your child will almost certainly giving you a hard time. You don’t need a well meaning professional putting their head on one side and asking why you feel the need to be so controlling. You are fighting Ed. you don’t need to fight anyone else.
4. You need time and space with no distractions. Shopping trips can wait. School and college can be deferred. Recovery is at least one full time job, one which gets bigger and more unmanageable the longer it is delayed.
5. Kindness. To your child, to you and from those around you. You are battling an evil vicious destructive illness. Simple acts of kindness will make a huge difference.
It has taken me so long to learn these lessons. And perhaps, that was necessary. If it had been possible, I would replace the eight months L spent in hospital, with eight months at home, feeding L and holding her after meals. But no one would pay me to do it and food costs money. But now, as the school term has ended and we have over two months without school, we have a chance. I really need to make sure we take it.