Force-feeding: There was a time when I would rather die than eat the food in front of me

Ilona Burton

Viasys corflo ng tube Fr8 241x300 Force feeding: There was a time when I would rather die than eat the food in front of meThere was a time when I would rather die than live with the guilt that came after drinking the nutrition substitute that replaced the contents of that plate of food that faced me.

There was a time when I thought I would never recover, or even get to stage where I could bear the thought of digesting what ‘normal’ people would consider a ‘proper meal’.

I was stubborn in my belief that anorexia would always rule my life. I turned a blind eye to the people who would come and visit us in the hospital and tell us they had recovered and that life could be amazing for all of us. “Rubbish”, I thought, as I cried over a bowl of tasteless build-up soup.

I never wanted to accept that the doctors, nurses and therapists had a valid point when they told me that the reason I couldn’t see past my eating disorder was because, like the rest of my body and organs, my brain was also starved.

Anorexia stops the brain from functioning properly; it effectively gives you tunnel vision, unable to see another way, another life and especially unable to back down to what it tells you is the truth. It’s you against the world, and anyone who interferes with that will deal with the consequences (this is why every parent, partner, carer and friend will tell you that living with someone with an eating disorder involves constant treading on eggshells.)

When you’re in that state of mind, recovery is not an option. You won’t find many people in the grip of an eating disorder who really want to let go. You may find some who wish they wanted to, but aren’t “ready”. But that’s not to say you can’t work towards it.

The truth is that recovery from anorexia and any other eating disorder is possible. I’m part way there and the question of whether FULL recovery is possible remains to be seen in my case – but I am no longer nearly as cynical and dismissive and I feel for the poor people who spent so many months trying to encourage me to realise that there was a life outside of calories and puking. On the whole, I’m healthier and happier than I have ever been and for me, that’s just fine.

But we’re not all me…

This week, a high court judge ruled that ‘E’, a severely anorexic 32 year old woman is to be fed against her will, if necessary, forcibly.

She has been treated for anorexia since the age of 11. It’s my guess that she was probably ill before that, as it often takes a while before treatment is sought and/or given.

She hasn’t eaten solid food for over a year.

She has other health problems and is ‘gravely unwell’.

Her BMI is extremely low, but the judge said that she is “not incurable”.

‘E’s family and friends told the court that she had suffered long enough and believed she should be entitled to a dignified death. She has, until now, been in palliative care to do just that.

Despite acknowledging the fact that the former medical student is highly intelligent, the judge ruled that she “lacked capacity to make a decision about life-sustaining treatment”, hence the final ruling.

It’s a sad story, however you look at it. I have never been as ill for as long as ‘E’, and even if I had, I would have no place to say whether this decision is right or wrong – nor do any of us.

What I can say is that I have witnessed the blood curdling screams of those being force-fed. They rattle through the corridors of eating disorder units all over the country. They come from girls, boys, women and men who wouldn’t say “boo” to a goose. They stay with you forever.

Since 1997, doctors have had the power to force-feed anorexic people in order to prevent them starving themselves to death. It’s a desperate situation, but when a person is so entrenched in an illness that constantly tells you that food (and sometimes drink) is the enemy, you become paralysed with fear and will do anything, no matter how out of character, to avoid it. Many of the nursing staff I have spoken to about this have told me that they have struggled more when trying to restrain a frail, skeletal anorexic person than a fully grown burly male.

The argument for force-feeding is that the person in that position is not capable of making that decision for themselves, and so (lawfully) it is in their best interests. I would worry how many more deaths we would have from anorexia if it was not allowed.

But should ‘E’ be forced to continue a life (if you can call it that) that she no longer wants to live?

The question, it comes down to really is over whether treatment is futile when a person is so far down that line of self-destruction.

‘E’ has been ill and in and out of treatment for 20 years. One of the things that has been most instrumental to me turning my back on anorexia and all that goes with it (or at least attempting to) is focusing not on the green grass on the other side, but looking at the misery ingrained on the faces of those I knew who had suffered for longer than I had. I think misery is the word that best describes the mood of anorexia and of being in treatment when you would rather be left at home to starve to death in peace. Sounds harsh, sounds extreme – but this is how serious it gets.

I am of the opinion that recovery is a process of undoing. Undoing all of the thinking processes and the attitudes and actions that have developed over a period of time. This is why recovery is neither easy nor quick – especially after years of illness and failed attempts of getting better. This is also why, to many, it seems impossible, unattainable and therefore not worth trying. In ‘E’s case, it’s more likely that she has tried so many times that whatever motivation had been there has dissipated over the years.

The question really should be what is more humane? Forcing somebody to exist in a shell, where there is no fight left, or give that person a chance and hope that one day she might thank you. For the family, I don’t know what is worse – allowing a life of a loved one to slip away because you know that is what they want, or seeing your own flesh and blood struggle on, against their will.

I don’t have the answers. What I do know is that I have seen both sides. I have seen people who have been ill enough to die at any moment – some have found the fight in them and have gone on to live happy lives, get married and even have children. Others have left hospital and have returned, sectioned under the Mental Health Act just months later; the cycle continues.

I feel desperately sorry for ‘E’ and all those who know her. I also feel for those whose job it is to administer her feeds. The judge did what he had to do – preserve the life of a woman who can’t see her future, but is too ill to make the choice.

At 32, it seems too young to give up hope.

My fingers are crossed.

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  • Emma Cooper

    I agree that this article is really well written, you write really compassionately about the difficult balance of respecting ‘E’’s wishes, while also recognising that the choice she is currently making may not be the one she would make if she were properly nourished. I can remember a time when I had that ‘tunnel vision’ of anorexia, and now, looking back, I am so glad that someone was able to get through to me. I don’t feel like that person was really me, because I behaved in ways that went against my values because I was trapped by fear and guilt. I really hope that ‘E’ can regain a sense of hope for her own future and come to live a life free from her eating disorder. I don’t think it is too late, at all.

  • Aditya Samitinjay

    Yes, But I’m not fat, so it may be genetic that I won’t put on weight at this age!

  • rphawkins

    This kind of desperate sensationalism belongs over at the daily mail….

  • VicTheBrit

    “desperate sensationalism”

    Ummmm. Not quite sure what you mean by that…

  • blessyz

    I’m starving, I could eat a Big Mac Meal with a strawberry milkshake right now yum!

  • Sarah Sparkle

    ‘If you answer yes to the question “are you happy to see food” then you don’t have an eating disorder. Unless you’re really fat.’ wat

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