Survival was worth the effort

A nurse responds to the article 'Anorexics force legal decision' (Nursing Review, page 36, February).

My reaction is heartfelt compassion and empathy for the issue of autonomy that the author Scott Trueman so rightly identifies as a legal and medical conundrum.

As someone who lived with severe anorexia nervosa for more than 15 years, including multiple hospitalisations (some involuntary admissions), tube feedings, ECT and a multitude of behavioural modification programs that focused on punishment and rewards linked to weight changes, I was one of those sufferers who felt intense depression and futility about life. I believed that it was my right to refuse treatment because of the torturous mental aversion/fear of any food or fluid touching my lips and entering my body. Following suicide attempts and severe illness over 15 years, the doctors in Australia gave up hope for recovery.

At that time, I believed that I was competent to make life decisions, including those regarding acceptance or refusal of medical treatment. After all, I knew the consequences of each choice. I was a registered nurse with experience in caring for those with eating disorders. From my perspective, my thoughts were rational and clear. I had the self-perception of competence and would challenge anyone who doubted it.

My last admission in Australia was as an involuntary in-patient in an adult psychiatric ward of a major public hospital in Melbourne. I fought that involuntary status tenaciously and subsequently was awarded my 'freedom'. I was dying. I knew I was dying and I really didn't care. I believed that it was my right to choose treatment refusal. To me it was the only way to escape the mental distress associated with eating.

My world changed when I left Australia a month later for a last-ditch chance at recovery. I had received a glimmer of hope from someone a world away in Canada - someone who understood my mental anguish without need for explanation. This private treatment facility in British Columbia promised hope for full recovery. I didn't believe that I deserved treatment or that I was worthy of their investment in my future.

But there was a tiny part of my mind that grasped onto their words of compassion and hope.

The mental mindset at the core of eating disorders is one that convinces the sufferer that they are unworthy of support, that they need to reduce their size to take up less space in the world, and it twists thoughts to make the individual believe that food and fluid will somehow inflate their body size and increase their degree of distress. It is this mindset that the sufferer seeks relief from. Death can seem like a viable outcome. But the truth is that every single sufferer, no matter how severe or chronic with their eating disorder, has a tiny place inside that yearns for help, safety and wellness.

They just can't voice it because it seems indulgent or self-centred to ask.

The physical effects of malnutrition experienced by people with anorexia and bulimia do have a significant impact upon neuro-cognitive functioning. The negative voice that dominates their mind filters every conversation and thought into a deleterious message in their head that paralyses them and makes rational decision-making about treatment elusive. Biochemical changes adversely change the pattern of activity in the brain. Although often capable of logical thought in other areas of life, the emotional disengagement and irrational beliefs about nutrition and the illness process impair judgement specific to treatment refusal.

For the legal system to decide that a sufferer has the right to refuse treatment even when critically ill is simply evidence of a lack of understanding and knowledge about the true nature of eating disorders.

Sufferers have their minds controlled by an illness that disrupts brain function and destroys the physical body. How can someone with such impairment make an informed and rational choice about treatment refusal?

I would suggest that there is real hope for recovery for every person afflicted with an eating disorder. I plead with lawmakers and treatment professionals to search for that tiny voice within each sufferer that is seeking release and can cling to hope. One can reverse the deadly eating-disorder mindset completely.

I thank the author of the article for bringing this challenging scenario to the forefront and prompting dialogue and reflection. I hope that my personal story and assertions of hope can prevent even one legal or medical decision that allows treatment refusal when there really is true hope for a full recovery. No-one, absolutely no-one, is beyond help.

By the way, 14 years along and I am happily living an active and fulfilling life. The old patterns of illness, food aversion and weight loss are simply a long-ago memory. Life is indeed worth the effort of recovery. Life is bright, rewarding and full of opportunity.

Jenelle Cooper, RN

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