Labelled a waste of resources and incurable – where else can an adult with an eating disorder go?

Labelled a waste of resources and incurable – where else can an adult with an eating disorder go?

What would you say if you learned a chronic illness was spreading silently through the population, affecting some of the country’s best and brightest people? Hospital beds are scarce, waiting lists are growing longer, and people are getting sicker. Some people are dying while they wait. Would you consider this acceptable? Or would you call for more beds and more resources to be put into treating this illness?

If you then learn we are talking about eating disorders (ED), will your view be unchanged, or will you now dismiss this as a lifestyle condition that impacts skinny girls who think they are fat? Will you say those people don’t need hospital beds; they just need to eat?

The widely held belief that an ED is a choice, even among the medical profession (who should know better), is far from the truth. The suffering is as real as it is endless – the most common cause of death from eating disorders is suicide – such is the torture. This deepening problem must not be allowed to continue. Individual therapists and the few specialist doctors are doing their best, but more resources are needed, before more people suffer and die. What will it take?

Running out of time

My ED first reared its ugly head in 1988, when I was 16 and starting Year 11, but the illness had been many years in the making. I had endured endless bullying since the end of primary school – mostly ostracism, name-calling and children laughing at me. The only thing I felt I had going for me was athletics. I was the fastest runner in my year and best triple-jumper in the school. So, I made up my mind to be the best I could be at both.

An upcoming state championship would be a good place to prove my worth. I aimed to cut out junk food and train extra hard, then reward myself at the end. That first attempt paid off – I won my medal and thought I had found the key to success – and to shutting up the bullies. And I was able to let myself eat better again.

Unfortunately, that was far from the end. I had the school athletics season (1988) ahead of me and I figured I would do the same again – restrict and train as hard as I could to  prove my worth. But that time it didn’t work out the same. I was losing too much weight and my performances were affected, but that just meant I trained harder.

However, I managed to pick myself up and eat better again and came back from a family holiday feeling better. That’s where I wish ED had left me alone. But no – there were upcoming trials for a Pacific School Games that I was expected to attend. That started the whole process over again, but somehow I qualified. I wanted to withdraw from the competition, knowing what could happen, but the school wouldn’t let me.

I was proved right – and I couldn’t let myself go until it was over. My performances were average but what really hurt was being on the end of the worst bullying – being ignored, told I didn’t belong, my selection was just a fluke – words now don’t give justice to how I felt. I would end up hating the sport if that was how it was going to be.

I was so stung I made up my mind that the Year 12 school season (1989) would be my last in athletics and then I would quit. “One last effort,” I told myself. But this time I couldn’t let go, give myself a rest and eat properly again. I pushed myself too hard, lost too much weight and couldn’t beat people I had never considered a threat. That was humiliating. I trained harder and harder and lost more and more weight. Eventually, I missed out on school selection in the athletics team. Having to sit in the stands and watch others compete was one of the worst days of my life. The memory upsets me even now.

I dream what will become of me when my parents are gone

Until my failure to make the athletic team, no one had questioned my weight loss. The school actually rewarded me for attendance at training and I became skilled in disguising things from my parents.

Eventually the school took notice. I was 18 in the middle of Year 12 when I was hauled in to see the headmistress who said, “People are worried”. I was referred to a counsellor  who referred me to a specialist psychiatrist who diagnosed anorexia nervosa, and I was in hospital a couple of weeks later. I went on to develop Severe and Enduring Anorexia Nervosa (SEAN), which is used to describe someone who has been living with an eating disorder for a long time.

In my earlier years I didn’t mind the hospital admissions.  When in hospital I felt I had permission to eat nice things, and permission to gain weight. But as soon as I reached my target weight I would hit a brick wall. I no longer needed to gain weight, and therefore I couldn’t justify eating. So started the merry go round… which continues to this day.

Despite all this, I did manage to finish Year 12, obtain a university degree and hold down a job for about six years until I became too sick to go on.

From that time on, ED became my life. I have missed (or haven’t enjoyed) Christmas, Easter, birthdays and anniversaries. I have been unable to travel and have to exist on the Disability Support Pension which allows very few pleasant opportunities, even if I wanted to attend them, for example sports events, movies or musicals.

Over time, ED has become such a large part of me, so much of who I am, that I am too scared to let it go. I fear that without it, I will be nothing and will be incapable of looking after myself properly.

At 49, I’m still reliant on my parents for financial and emotional support and dread what will become of me when they are gone.

Adults with eating disorders have different needs

In my experience, treatment is less effective now than it was when I was younger. I feel frustrated that the treatment teams don’t look at what works and what doesn’t work for adult patients and make adjustments for individual needs. There seems to be a lot of research for little outcome with results.

I have sat through numerous focus groups and pilot programs where other SEAN patients and myself have told them what is wrong with the system, but nothing changes. Nothing better suited to our needs comes out of it.

Programs for adults have only changed for the worse, becoming more restrictive. For example, you don’t get as much leave, and staff come down harder on you if you don’t eat your meal. Even when taken on an outing, it is all about the food and not about life quality.

Adults need some quality of life and something else to think about besides food. I would like to go to the movies, see a stage show and even go horse-riding, or walk along the beach.

Such outings would help adults to feel part of the community. Our ED locks us away from the community.

It’s the same, no matter what stage you are at with your illness. This is frustrating and disappointing and at times, makes me feel like there is nothing for me. Doctors have labelled me a “waste of resources” and “incurable” which is very upsetting and despairing. I am left feeling there is nowhere else for me to go.

Eating Disorders Victoria to seek participants for creating new SEAN program

A person-centred approach to ED treatment is needed to change things for mature aged people living with ED like me. I am encouraged to learn that Eating Disorders Victoria (EDV) has been allocated funding to design and deliver a psychosocial and wellbeing program for people with SEAN and their families/carers. The program will be co-designed by people with SEAN experience and their families/carers. EDV will undertake scoping for the program in the next two months and will call out for participants. I’ll look out for this opportunity and encourage others living with SEAN to do the same.