You don’t need to be interested in eating disorders to have found the legal case of ‘E’ tragic and yet fascinating. E is 32, a former medical student who has faced years of battling anorexia, as well as other health problems. She has not eaten solid food in a year and no longer wants to live. Her doctors agree she has capacity to make decisions, but the health authority applied for permission to force feed her, arguing that she had not had access to treatment that could save her. E’s parents opposed the application, as they felt E had suffered enough and that she should be allowed to die peacefully and with dignity.
It is just unimaginable how much pain E and her parents must have endured. This week, I have felt under pressure and stressed because of leaving L, stepping back and letting her or someone else decide whether she eats. How that pales to the torture they must feel. How it must be to say, Enough, and know that your child, because however old, they are our children, will die and you can do nothing. Not from cancer, or a car accident, but from a mental illness that makes you starve yourself.
The judgement went against E and in favour of the Health Authority. I have read the judge’s words and while the arguments are sensitive and considered, I dont agree with him. Underlying all of his assumptions appear to be that somehow mental illness should not be allowed to kill us, that it is not as serious as proper illness. And if a judge did think like that, he wouldn’t be alone.
Mental illness can rob its sufferers of all quality of life, in exactly the same way that degenerative disease can. There is generally a great deal of sympathy for those who seek the right to die because every waking hour is dominated by physical pain. Even those who oppose the right to die will have sympathy for the sufferer. But what about those whose every waking hour is filled with mental or emotional pain? Whose existence feels so bleak that they have no interest in continuing with that very existence. Generally, there is little sympathy, and sometimes outright hostility. Pull yourself together, snap out of it, are examples of the less helpful advice. Time off work may be treated with suspicion (although those who sometimes do abuse the system share the blame). A colleague of mine once described how her brother in law who had suffered depression for years and one day climbed to the top of a road bridge and threw himself off. She ended the story by describing him as selfish. I was genuinely shocked. What pain must a person be in to condemn themselves to a violent death? Those who feel that way will often feel that in fact they are doing the best for those who love them. I have suffered depression for many years, it comes and goes, but when it visits, the worst part is that sense of hopelessness, to wake from insufficient sleep and realise that it is another day when you will have to get through by telling others you are ‘fine’, where speaking, listening, not crying, takes enormous effort and knowing that if you say, actually I’m depressed, no one will really know whether you mean you are a bit fed up, or genuinely ill. Where symptoms of the illness cause you or others embarrassment – sneezing or coughing in public is irritating; weeping is unthinkable.
For E and for L, their struggle will be always made harder by those who think they just need to eat more, stop being so self obsessed or attention seeking, by those who cannot see the illness that cripples them as much as any physical injury or disease. This iisolates those who suffer believing that perhaps it is their fault and that those who love them see them as a burden.
We are a hugely advanced society, we can fly people to space and back, transplant organs from one person to another and cure illnesses that ravaged our ancestors by a single vaccine. I can sit on this train and from my phone write something that someone across the world can read. But until we can understand that the pain of mental ill health is every bit as hard and disabling as physical illness, until we realise that because someone looks fine, they may be anything but fine, then we still have a long way to go before we are truly civilised.