Let’s talk and break down eating disorder stigma

Why Tasmania is not the place to be if you are an adult with an eating disorder

By Dr. Sarah Wells

The 2018 World Eating Disorder Action Day slogan, break down the stigma, is powerful. When you are in the thick of it, the slogan results in one looking inside oneself and self-reflecting. After this, comes the more challenging task of facing the stigma that still exists. This stigma in Tasmania is so strong, that receiving adequate treatment as an adult with an eating disorder is virtually impossible.

I fear that it is not just in Tasmania that we are far from achieving the task of “breaking down the stigma.” But this year’s slogan allows conversations to begin. And the beginnings of the conversations are invigorating for me. As Brenè Brown explains in her book Rising Strong (2015), your first writings, about where you want things to go or what you want to write about, become your shitty first draft (a term first used by author Anne Lamont in 1994, her book Bird by Bird, where she reflected on the process of writing).

And World Eating Disorder Action Day 2018 has been the catalyst for this, my shitty first draft about the stigma and the lack of eating disorder services for Tasmanian’s who are struggling, and suffering unnecessarily.

I know this, because I live in Tasmania and it has been my work’s passion for the past 16 years to provide treatment to Tasmanian’s with eating disorders. For all these years I have been living the shitty first draft as Tasmania is now the only state in Australia to have no dedicated and specialist treatment team for adults with eating disorders, which affect about two per cent of our population, or around 1,000 people.

The services for children and adolescents are better, with a dedicated inpatient program and intensive medical monitoring in follow-up from admissions, as well as follow-up therapy provided in the community; that is, once you get through the significant waitlist for the system.

Talk about a shitty first draft. This is possibly the worst shitty first draft you could have in the treatment of this complex and hard to conquer disorder. And it has remained this way for my entire career as a clinical psychologist. I feel a heavy burden when I reflect on this. And, if we are truly to break down the stigma; we need to speak up.

Given that the proportion of people with eating disorders approximately represents those with schizophrenia, just higher at about three per cent (DSM-5, 2013), and the most frightening statistic being that those with eating disorders have the highest mortality of all mental illnesses from complications to do with the medical sides of the disorder, as well as suicide; one would think that services would be well equipped and knowledgeable about how to help this patient group.

The quote about the mortality of those with eating disorders comes up time and time again when professionals are together talking about helping people with eating disorders, when debating and advocating the need for services and the distribution of funding of those with mental illnesses. Is stigma the cause of the lack of services for those with eating disorders here in Tasmania?

Of course, other limitations also come into play in influencing the distribution of funds for various diagnoses. Unfortunately for those with eating disorders, they form a patient group that require expert or specialist clinicians, not generalist clinicians who have attended a workshop or two.

In my home state, we don’t have an effective, funded public health specialist team and there is a very small number (less than five) of health professionals in private practice with the specialist skills to do effective treatment with eating disorder patients. We also know that eating disorders require long term therapy. It isn’t the kind of problem that can be solved in 10 sessions with a psychologist under Medicare’s current programs for rebates under the Better Health Access Scheme.

Professor Christopher Fairburn, in his book Cognitive Behavioural Therapy for Eating Disorders (2008), recommends that for people with problems with binge eating, whether they purge do something to compensate for their over-eating episode, about 20 sessions can help the patient, provided it is the main presenting problem (this is rarely the case).

He also recommends, that for those with anorexia, it is better to see the patient twice per week, and a wrap-around team is essential. The team approach includes a psychiatrist who can monitor symptoms and prescribe appropriately when needed; as well as who can address other issues the patient may have (e.g. major depressive disorder, obsessive compulsive disorder) while the patient is undergoing intense treatment for their eating disorder. A clinical psychologist with expertise in eating disorders (specialist knowledge is crucial here – always ask the therapist whether they are up to date with training in eating disorders, how many patients they have seen, and what conferences and training they are attending to figure out whether they are the best clinician to be in a position to help) conducts the therapy with the patient.

Up to and beyond 40 sessions are required, again for a patient with just anorexia, but this is rarely the case and co-morbidity (more than one problem) is the norm rather than the exception. A dietitian can guide a clinician into helping the patient expand food choices, or help with psycho-education to the patient about the nature of diet, nutrition and why we need something from all the food groups. A physiotherapist can assess safety for the patient in engaging in physical activities, and a medical specialist must oversee the patient’s overall health.

Every time we write an article about eating disorders, we include statistics about this being the mental health problem with the highest mortality –  that people die from this disorder, yet we still hide away from truly confronting the lack of treatment most people get.

In Tasmania each of the major hospitals will help patients in medical emergencies and will do their best to make things work, with little to no knowledge of inpatient care of eating disorders. However, the absence of specialist skills and a coordinated treatment team, while available for young people with the disorder, makes treatment for adults impossible. The only solution – go interstate, leave all your family and friends; leave your support system, and take the gamble that the place you go to will work for you.

Many people with eating disorders have found that leaving their home state wasn’t worth it. An all too common story.

There are also significant statistics that come in to play in making these decisions: the average duration of an eating disorder is seven years; there are usually many attempts at treatment before progress is made, one-third of people go on to have severe and enduring eating disorders, one-third of people get spontaneously better and one-third of people go on to develop chronic eating issues, as well as other psychological problems such as anxiety and depression (Fairburn, 2008).

Many are unable to work, unable to find lasting friendships, and don’t have partners or significant loves ones in their lives. There is a significant long term health and psycho-social burden if we are unable to help people quickly and early.

In Tasmania, if you’re over 18, we have no coordinated professional services. Tasmania is not the place to be if you have an eating disorder.

Let’s continue to Break Down the Stigma of Eating Disorders, not only on one day, but all days and all throughout the year. Let’s this year be our Shitty First Draft in how we are helping those really struggling, including the clinicians who feel ill equipped to do the work. Let’s make 2018 and 2019 the year we begin to coordinate services on a grassroots level not only in Tasmania but across Australia and around the world.

REFERENCES

Brown, B. (2015). Rising Strong. Siegel and Grau.

Fairburn, C. G. (2008). Cognitive Behaviour Therapy and Eating Disorders. New York: The Guildford Press.

Lamont, A. (1994). Bird by Bird: Some Instructions on Writing and Life. Scribe Publications.

About Sarah

My name is Sarah Wells, and I am a mother to three young children, aged 3, 5 and 7. I live in Hobart, Tasmania’s capital city, and have worked as a clinical psychologist for the past 16 years. My husband runs an aviation tourism company here in Tasmania. We are lucky enough to be able to access by air, some of the most beautiful, untouched wilderness in the world, a UNESCO World Heritage Area in the SouthWest National Park. We love Tasmania, and I am passionate about doing better for the people of Tasmania who struggle with eating disorders.

I have focused on developing my specialist skills in the treatment of patients with eating disorders since I began my psychology degree, and during my time at the University of Tasmania, both my honours and PhD theses were focussed on body image and eating disorders.

I have had strong drive to provide services for this group of patients since I was a young teenager, and underwent treatment for an eating disorder in a small rural town in Tasmania. Back in that time, at age 13, I spent four months in an adult psychiatric ward of our local public hospital, with no visitors, no access to a bathroom, and little to do but occupy myself with a pack of cards, and eventually, in the last month, some school. I was accompanied and observed showering, and then cleaning my teeth in a bathroom with a large orange piece of vinyl covering the mirror to my eye line. I felt a deep sense of shame and build up some strong walls to keep myself sane during this time for it made no difference what I said or did, or whether I displayed any sad or negative affect.

But, this was treatment? It profoundly impacted my life. And it left me with a fire in my belly to become a clinical psychologist myself and to do treatment better.

Although it is well known that treatment of eating disorders is my clinical passion, my history as a young girl is not well known.

But as we work to break down the stigma this year and I take a role in advocating more strongly for the people of Tasmania, and the services desperately needed, my 13 year old self is shouting (internally) for me to speak out. I do so with some reservation; stigma is alive and well here.

Unfortunately, more than two decades on, I am embarrassed to live in a state where treatment is still so poor. We must do treatment for eating disorders better. The 13 year old girl in me is fighting me to come out and say “this is not good enough; this can’t go on any longer.”

I cannot remain silent. I truly believe we need to break down the stigma internationally, as well as at a grassroots level in Tasmania.