Bringing the voice of eating disorder experience to the clinicians’ table

Bringing the voice of eating disorder experience to the clinicians’ table

By June Alexander, Shannon Calvert, and Dr. Anthea Fursland

“I took a deep breath and hit ‘send.’ I had promised myself that in recovery I would choose courage every day of my life, for my life.”

– Shannon Calvert

In the past, Shannon felt ready to die from her eating disorder. Today, she serves as a national advocate, helping others. This is Shannon’s story:

“Thank you for considering my expression of interest to join the ANZAED Consumer and Carer Committee (CCC).”

Applying for this position felt surreal. Clearly I was living proof, as a 41-year-old woman who had experienced a severe and enduring eating disorder (SEAN), that recovery is possible.

Wholeheartedly, in recovery I believe in hope for anyone. My life experience is my evidence.

I can count on one hand the moments that have changed my life for the better, but have lost count of experiences that were detrimental and led to complicated trauma. Towards the end of my illness I had been begging to die from the stigma and shame associated with my eating disorder. I had lost hope and with that, was stripped of everything I had loved. Trying to get back up, I fell down many times. God, I fell hard. To get up, and stay up, I had to believe I was more than this.

I’d had my eating disorder for 28 years, but the illness was not me. I chose to fight for my true life.

This decision or turning point occurred when I gripped the hands of those who believed I could find my way out of the dark. There was the inspiring strength of my friend and fellow advocate, June Alexander and the integrity and perseverance of my psychologist, dietician and GP. Eventually too, there was a compassionate team of supporting clinicians who refused to give up, even when I gave up on myself. In one of my last conversations with my late mother she said, “My girl, you are going to live.” She was right.

An integral part of my healing and ongoing recovery has involved engaging in the community and pursuing a desire to connect with and help others. My priority is to advocate for the dignity, respect and right to have appropriate choices of treatment for those affected by eating disorders. We need to communicate and have compassion for the patient and carer, and equally educate the services that are limited with knowledge and understanding on how to treat eating disorders. For instance, I owe it to myself to never lose, or allow others to cause me to lose, self-respect again. I believe any discussion must be collaborative, open and honest, sharing where treatments and behaviors are detrimental towards recovery, most importantly supporting the choices that are successful.

Reflecting on personal experience has strengthened my ability to provide insight and perspective in an advisory capacity as a voice of the ‘living’ experience. I find purpose in sharing how the foundations of compassion and understanding can build a road towards hope. Advocacy for me resonates ‘to walk with.’ I know now I am not alone in this. The more experience and insight we share, the more hands and heart we have to keep building the road. I am an activist; however, I choose not to live in pain and fear of all that is wrong. I advocate working with what we have to improve current practices and to keep moving forward. We are progressing, but not enough, not yet. What saved my life from an eating disorder was having others fight with me, not against me.

When opportunity came to express interest in the inaugural ANZAED Carer and Consumer Committee, I held onto courage and stepped forward. I didn’t believe I would have the privilege to stand where I am today, sharing with and walking beside fellow carers and consumers, and having my voice valued by clinicians. As long as we keep speaking, no one is alone.

“Dear Shannon, I am delighted to advise you that your nomination to the inaugural ANZAED Consumer Carer Committee (CCC) was successful.”

Congratulations, Australia and New Zealand

The Australian and New Zealand Academy for Eating Disorders (ANZAED) has paved the way for Shannon, and other people with experience, to share their stories in a professional environment, through the Consumer Carer Committee.
This development is big and exciting because much about eating disorders – the cause, the optimum treatment – remains a mystery. Often no reason is evident as to why a person develops an eating disorder, and why one person recovers, and another does not.

The good news is that science is increasingly becoming aware that the answers will be found through listening to the patients (consumers) and their carers. The patient’s story and the carer’s story have been an untapped resource for many years. Today, in Australia and New Zealand their voice is being heard, as the following insights, from myself as a patient/consumer, and Dr Anthea Fursland, as a researcher/health practitioner, reveal.

Why listening to others matters – June’s story

Like Shannon and many people who heal from an eating disorder, I felt a desire to share my story, thinking if it helped one other person know they were not alone, and they could be helped, then my years of suffering would be worthwhile. I attended my first eating disorder conference – an ANZAED conference in Brisbane – in 2009. I felt apprehensive and timid, as I ventured forth into the open after years of living in the dark, silenced by the illness; I felt unsure if I belonged or had a right to be there, among the professionals. But as soon as the keynote speaker and other presenters took to the podium, epiphanies began to occur in my brain, like fireworks lighting the night sky. I wanted to stand, and yell, and clap my hands with joy.

The researchers did not know me but they were describing my life. Listening to them helped me to understand my suffering and my illness. After the conference, I went home nurturing a beautiful, little well of self-belief.  I felt understood, and that yes, I did belong. From there, I progressively shared my story in supportive environments and with encouragement became an advocate in raising awareness of eating disorders.

I have learned:

• Helping others helps myself.
• Sharing my story helps others feel it is okay, safe, to share their story – at every age.
• Sharing my story helps people see that they, too, can recover.
• Getting involved, doing voluntary work, provides personal fulfilment.
• In helping others, in pushing personal boundaries, self-growth always follows – in often surprising and delightful ways.
• Meeting like-minded others (researchers/people with experience of the same illness/carers) who share a passion for increasing awareness of eating disorders gives the feeling of belonging, of being connected, understood and accepted, and worthwhile. Meeting like-minded people is like being at home with a supportive family – in which there are no secrets, no judgment, and everything is shared.
• Attending conferences and support groups, listening to others, sharing with others in a safe and supportive environment – is like an injection of well-being, a booster against lapse and relapse. Doctors cannot provide this kind of care.
• Evidence of life experience DOES count.
• Everybody can help and can make a difference. Including you.
• Passion cannot be learned. It comes from within. Alone, we have one voice; together we have a shout.
• Eating disorders thrive on secrets. Advocacy is about shining a light and illuminating the darkness by listening to those who have lived, or live, with the illness 24/7.
• Advocacy is the bridge on which knowledge travels from researcher to treatment centres, from an evidence-base to a health provider, from an academic paper to a GP, from a non-profit eating disorder support organisation to families, from all of these, to where it counts – to you.

Today I belong to and serve on a number of national and international organizations, including the NEDC, F.E.A.S.T. and the AED and, at every level, recognition is growing of the need to listen to the voices of patients and carers. Bravo, ANZAED, for bringing consumers and carers to your table.

Why the voices of patients and carers matter – The professional’s story  

By Dr Anthea Fursland:

I am delighted that ANZAED has created the Consumers and Carers Committee (CCC), a new group that comprises professionals and those with a lived experience, either as a sufferer or as a loved one of someone with an eating disorder. ANZAED is “the peak body for eating disorder professionals involved in research, prevention, treatment and advocacy in Australia, New Zealand and beyond” so why, one might ask, involve consumers and carers?

I have believed for some time that we professionals need to listen to, take note of and include the voices of people “on the other side of the desk.” It is shocking to think of this now, but I had been a clinical psychologist working in the field of eating disorders for thirty years before I knowingly spoke to anyone, apart from my patients and their family members, who had experienced an eating disorder. Times have changed!  The first consumer conference I attended in 2010 was a positive experience, learning from people who had suffered from an eating disorder.

I felt humbled as I was forced to confront my own prejudices.

Soon after, I had my first experience of having colleagues with a lived experience, on the Steering Committee of the National Eating Disorders Collaboration. June Alexander was a shining example of someone using her experience of this terrible illness to contribute to the field. I currently work with a Peer Support Worker, and have learned first-hand the invaluable contribution she makes, and noticed that many professionals value her insights more than they value contributions from seasoned clinicians!

If we professionals are to value the voices of consumers and carers, we need to look at our attitudes towards colleagues in the field who acknowledge a past eating disorder. If we cannot value them, how can we expect to value the views of others with a lived experience? We know that many professional colleagues have a lived experience, but many tend to keep their history secret because they fear there is too much at stake to “come out” and that their accomplishments may be invalidated if their past experience is known.

It is my belief that reducing the stigma of being a professional with a history of an eating disorder will only be achieved by us all being brave: the professionals with a lived experience being open, and the rest of us professionals being welcoming and non-judgmental.

Professional organisations need to create space where people with lived experience can contribute. In my tenure as President of ANZAED (2011-2013) I proposed involving consumers and carers. My idea was initially met with doubt and it was suggested that I was being tokenistic. Time passed while I gathered my thoughts and came up with a firm proposal, and ANZAED took time to consider and adopt the idea. Remember, this was five years ago, in a very different climate, when professionals were more wary of working with consumers. Fortunately, times are indeed changing.

In 2015, the ANZAED Executive agreed to establish a Consumer and Carer Task Force (CCTF) made up of consumers, carers and clinicians. I consulted with founder members of the Academy for Eating Disorders Patient Carer Task Force. With the blessing of the ANZAED Executive, the Consumer Carer Task Force met monthly for a year to identify ways in which consumers and carers could contribute to ANZAED. In 2016 the idea for a Consumer Carer Committee was formed.

ANZAED’s initiative in creating a Consumer Carer Committee marks an important step:

• for a professional organisation to be open to lived experience perspectives; and
• for consumers and carers to have their voices heard and to be taken seriously.

I wish the ANZAED Consumer Carer Committee all the very best.

* The inaugural Consumer Care Committee comprises: Jo Cook (Hobart), Belinda Caldwell (Melbourne), Helen Searle (Melbourne), Nicki Wilson (Auckland), Shannon Calvert (Perth), Lisa Dawson (Sydney), Sarah McMahon (Sydney) and Tanya Kretschmann (Brisbane). Initial chairperson is ANZAED president, Dr Beth Shelton, to be followed by executive member Genevieve Pepin.

About Shannon: Shannon Calvert is a consumer leader in recovery after 28 years with a severe and enduring eating disorder. Apart from her eating disorder, Shannon lives a life in recovery from depression, anxiety and PTSD. Shannon’s interests are directed in mental health advocacy to support the respect, rights and appropriate choice of treatment for those affected. Her aim is to promote hope in recovery and to support individuals receiving eating disorder treatment including their families and services involved. Twitter: https://twitter.com/moonpharie linkedin.com/in/shannonecalvert

About Anthea: Anthea Fursland has been a clinical psychologist for over 30 years, in the UK, the USA and Australia. She is currently Director of the Centre for Clinical Interventions, Perth, and the WA Eating Disorders Outreach & Consultation Service. Apart from her clinical work she is involved in teaching, clinical supervision and consultation, and applied research. She has co-authored many peer-reviewed papers and written a set of self-help information modules for eating disorders. She is a past president of ANZAED, sits on the steering committee of the National Eating Disorders Collaboration, and was awarded Fellow of the Academy of Eating Disorders in 2011.

Postscript: I will catch up with Shannon, Dr Fursland and others at the 2017 ANZAED conference, September 1-2, in Sydney. Appropriately, the conference theme is ‘Creating Connections, Harboring Knowledge’.

Hope to see you there!

Hugs,

June