Issue 57 I Storytelling and Recovery

About this resource

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Editor’s Note:

Wishing you all a safe and happy Christmas and New Year!

With the year coming to an end and the festive season upon us, this period can be challenging for people experiencing eating disorders and their carers. Face to face support is often limited during this time, so it is helpful to plan ahead and be aware of the phone and web support services available.

The festive season also brings with it the notion of community and connection with those around us. Connecting with others is also a key part of the recovery journey. The NEDC ‘Stories from Experience’ resource provides a written tool to connect with others, to make others more accessible, to hear the experiences of others and share an individual’s own experiences.  Telling our personal stories and organising them into a detailed narrative that makes sense of our experience, not only gives meaning to that experience and allows us to reflect but also guides us in shaping and informing our future actions.

In this edition, we examine the role of storytelling in the recovery process and the practice of safe storytelling using the NEDC consumer participation resource, ‘Stories from Experience’.  You will also find important information about the support services available over the Christmas and New Year period. These services are available Australia wide.

Importantly, we would like to thank all our members, collaborators and contributors for their ongoing involvement and support throughout 2018.

It has been another productive year for the NEDC. Engaging with our membership, developing and growing our relationships within the health sector and primary health networks across Australia has remained at the forefront of our activities. In 2018, we have worked together to develop the foundations of a framework that will support and educate our workforce, as we continue to work towards our vision of a nationally consistent approach to the prevention, treatment, and management of eating disorders. We will continue to drive the evolution of this framework in 2019.

The strength and importance of our relationships with our key stakeholders continues to provide the supportive foundations required to extend our reach and partnership across new areas of primary and secondary care, and amongst diverse sports and education sectors. We are grateful for the continued support of our stakeholders and unity in our vision to make eating disorders a priority mainstream health issue in Australia, with an effective continuum of prevention, care and ongoing recovery support for all Australians.

We look forward to 2019.

If you are interested in collaborating with the NEDC, we encourage you to join and become an NEDC member.

Contents

Article 1 - NEDC Resource: Stories from Experience
Article 2 - Story Telling and Story Writing: The Evidence
Article 3 - Support Information for the Holiday Period
Article 4 - Join the NEDC in 2019!

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Article 1 - NEDC Consumer Participation Resource: Stories from Experience

Social connection is a vital part of mental health recovery. The ability to communicate personal experience is an important part of connecting with others and consumer participation (National Eating Disorders Collaboration, 2016).

The NEDC Stories from Experience resource is designed to guide individuals who are recovering or have recovered from an eating disorder in writing their story. It provides a safe platform for the individual to:

  • Reflect on their experience
  • Make decisions about safely sharing their experience
  • Practice writing and speaking about their experience
  • Listen and respond appropriately to the experience and needs of others
  • Construct purposeful stories to achieve specific goals
  • Share evidence based information about eating disorders as well as personal experience
  • Access information about consumer participation and consumer advocacy.

`Stories from Experience’ includes 12 interactive modules and learning content to help reflect on experience and craft purposeful recovery-orientated stories. The modules include a series of readings, reflections, and writing activities, to guide the user through the crafting of their own story; in writing their story or using imagery to illustrate their experience.

An important feature of the resource is that it puts information and activities into an incremental sequence that focuses on personal wellbeing and safety before sharing with others.

The modules stand alone, but also build on each other to enable a personalised approach to using the resource.  

SFE Modules7The following group of modules are about exploring and preparing your own story:

  • Stories for Life
  • Stories in words
  • Stories in pictures
  • Sharing with Purpose
  • From experience to story
  • Powerful myths

The following group of modules are about connecting with others, to share stories and seek support:

  • Starting the conversation
  • Mutual Support
  • Raising awareness
  • Consumer representation (Many voices)
  • Virtual Connections

The following module provides a background on why the resource has been developed and the research basis for the resource:

  • Behind the scenes

The development of the resource was prompted by feedback from NEDC members and their families, with lived experience of an eating disorder, and existing research around the sharing of personal experience (Trowse, Cook, & Clooney, 2013). The NEDC consulted with members through an online survey and semi-structured interviews, to identify their needs and interest in learning to share their personal story (refer to Module 12 Behind the Scenes for these findings). From this, it was found that 89% of participants had already shared their experience of an eating disorder (primarily with health professionals, friends or family members) and 92% wanted to learn how to share their story in a safe and purposeful way.

The primary reason for participants wanting to share their story was to help others, improve services (Trowse et al., 2013) and raise awareness about eating disorders. They also share some common barriers to communication with other people with mental illness, including stigma, self-criticism (Shafran, Cooper, & Fairburn, 2002), shame (Troop, Allan, Serpell, & Treasure, 2008), a fear of negative evaluation by others (Bardone-Cone et al., 2010) and social isolation.

The underpinning premise of Stories from Experience is that writing and strengthening connections with other people can be positive for personal wellbeing if approached in a constructive, safe and supported way. In addition, it may enhance motivation for recovery in others and contribute to positive community awareness of eating disorders.

Who is this resource for?

‘Stories from Experience’ has been designed in collaboration with experts and people with lived experience.

This resource may be useful for:

  • Someone recovering or recovered from an eating disorder
  • Someone wishing to share their story in the media or online
  • People participating in peer support or consumer participation activities
  • Professionals who organise peer support or consumer participation activities
  • Carers wishing to write about their experience

‘Stories from Experience’ is a learning tool that can be adapted for use in different ways to meet the needs of individuals and groups. If you wish to share this resource with colleagues or peers, you will find additional information online.

Please note this is not a therapy tool.

References

Bardone-Cone, A. M., Harney, M. B., Maldonado, C. R., Lawson, M. A., Robinson, D. P., Smith, R., & Tosh, A. (2010). Defining recovery from an eating disorder: Conceptualization, validation, and examination of psychosocial functioning and psychiatric comorbidity. Behaviour Research and Therapy. https://doi.org/10.1016/j.brat.2009.11.001

National Eating Disorders Collaboration. (2016). “ Introducing Stories from Experience.” National Eating Disorders Collaboration.

Shafran, R., Cooper, Z., & Fairburn, C. G. (2002). Clinical perfectionism: A cognitive-behavioural analysis. Behaviour Research and Therapy. https://doi.org/10.1016/S0005-7967(01)00059-6

Troop, N. A., Allan, S., Serpell, L., & Treasure, J. L. (2008). Shame in women with a history of eating disorders. European Eating Disorders Review. https://doi.org/10.1002/erv.858

Trowse, L. C., Cook, J. G., & Clooney, T. J. A. (2013). Mental health consumer and carer participation: why we bother. The Medical Journal of Australia, 199(3), S10. https://doi.org/10.5694/mjao11.11141

 

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Story Telling - The Evidence

Article 2 - Story Telling and Story Writing: The Evidence 

Different terms are used for the components of personal recovery, however there is a consensus that recovery focussed practices are those that assist people to achieve hope, identity, personal responsibility, choice, and social inclusion (Amering & Schmolke, 2009; Andresen, Oades, & Caputi, 2003; Kogstad, Ekeland, & Hummelvoll, 2011; Slade, 2009).

Factors for recovery include connection, motivation, sharing interests, developing activities and relationships that focus outwards on life rather than internally, expressing emotion, self-acceptance, and knowledge of the recovery process, being that it is ongoing and requires commitment (National Eating Disorders Collaboration, n.d.)

We acknowledge that self-management in recovery can be difficult. Support and peer support are fundamental to enable the individual to sustain the outcomes of treatment (Federici & Kaplan, 2008) on their recovery journey.

The Stories from Experience Resource addresses these factors by:

  • Supporting the development of communication skills
  • Facilitating self-reflection
  • Encouraging the development of safe supportive relationships
  • Encouraging the expression of feelings and the development of a strong sense of self through writing and art
  • Supporting the development of interests particularly in writing and visual communication
  • Providing information about the experience of recovery
  • Providing resources to facilitate peer support

There is some research evidence to suggest that writing your personal narrative or story is an effective way of supporting recovery from trauma. This applies to recovery from any type of illness or trauma. Writing in a way that allows for expression of emotions and reflection on insights can significantly improve mental and physical health. This has been demonstrated for people of different ages, gender, personality type and life experience (Baikie, 2005; J.W. & J.D., 1999)

Baikie and Wilhelm (2005) suggest that people who engage in expressive writing can experience long term health benefits including improved mood and greater psychological wellbeing. Additionally, expressive writing has been shown to be of benefit to people who have experienced trauma and psychological difficulties, and it is suggested that writing, such as keeping a journal, can be a useful adjunct to treatment and recovery for people with psychiatric illnesses (Baikie, 2005).

A comparison of different approaches to writing used as part of mental health therapeutic programs found that clients who worked through a constructive writing course with a therapist reported an increase in self-knowledge and the ability to step back from their experiences and reorganise their thinking about these experiences (Cooper, 2013).

Additionally, brief and short engagement with writing tasks (research typically uses between three and five sessions of 15 minutes each) has been shown to contribute to positive health outcomes (Baikie, 2005). While, narrative forms, with a clear purpose and an orderly sequence of events, supports the development of insight, coherence and a sense of control over life (J.W. & J.D., 1999; Pennebaker & Chung, 2011).

There is a widespread assumption that reading other people’s stories of recovery provides motivation for personal recovery. People with eating disorders consulted by the NEDC support the notion that reading or hearing about real experience is more motivating than being told about recovery by a clinician. Further, research suggests that first person narratives may also contribute to professional understanding of mental illness by helping to make complex experiences more accessible (Grant, Biley, Leigh-Phippard, & Walker, 2012).

“Personal accounts of mental illness, told by those who lived it, can be powerful vehicles for educating mental health professionals. Rich in detail and emotionally compelling, memoir brings immediacy and ‘‘life’’ to the constellation of symptoms commonly associated with established psychiatric diagnoses. This narrative voice – the voice of the sufferer – is critical in helping students and clinicians deepen their understanding of both the nature of mental illness and of ‘‘what works’’ to promote healing (Donohue-Smith, 2011).”

The Stories from Experience Resource responds to the evidence for writing in recovery by:
• Providing constructive writing activities that require organisation and problem solving
• Encouraging expressive writing including the use of analogy and metaphor to express feelings
• Encouraging regular writing (e.g. journaling)
• Providing a resource for use in therapeutic and peer support groups

How does writing create a feeling of connectedness for the individual?

People with eating disorders identify key points in their journey of recovery as social, involving family, partners, and friends. Support for social contact and connection is recommended as part of recovery processes (Nilsson & Hägglöf, 2006).

This notion of connectedness in recovery is also impacted by the incidence of social isolation, described as a low level of engagement with others at an individual level – such as relationships with family and friends – and feeling disengaged or separated from the broader society (Mental Health Foundation,2010). These connections with other people create a potential network of support that people can draw on in times of difficulty. With the most effective networks being ones in which people mutually support each other both giving and taking support when it is needed.

An individual’s mental health is influenced by factors such as individual traits (genetics, life style and life events) and factors in the broader society (economy, societal and cultural influences). Social relationships seem to mediate between individual life factors and the impact of broader social influences, and may act as a buffer for external stress (Kawachi & Berkman, 2001).

The benefits of social connection have been identified as improved self-esteem, effective coping, improved mood, reduced feelings of distress and an improved sense of wellbeing (Berkman, Glass, Brissette, & Seeman, 2000; Kawachi & Berkman, 2001).

Feeling as if you belong, having a strong social network and a sense of mutual obligation for others in that network helps people to feel valued and encourages healthier behaviour patterns (Wilkinson & Marmot, 2003). Without these networks people are at greater risk of life threatening illness (Berkman et al., 2000). For an individual living with or having experienced an eating disorder, valued peer support relationships include establishing connections with people who have similar lived experiences. These relationships have been identified as an important part of the recovery journey (Hay & Cho, 2013).

The Stories from Experience Resource uses the following definition of peer support: 

“A process of mutual support where persons voluntarily come together to help each other address common problems or shared concerns” (Oades, Deane, & Anderson, 2013).”

Peer support may occur informally as part of everyday personal relationships or may be an organised group activity. The focus of peer support may be on emotional healing, or on sharing valued activities, or on learning together and often focuses on advocacy and activities that are experienced as empowering.

The Stories from Experience Resource responds to the evidence for connection, social isolation and peer support in recovery by:

  • Encouraging and supporting communication with others
  • Emphasising the mutual nature of peer support
  • Providing guidance in all modules on safe communication including exploring safety in peer support and in online communication
  • Providing a resource for use in therapeutic and peer support groups

Sharing personal stories, and organising them into a detailed narrative that makes sense of the experience, not only gives meaning to that experience and allows for reflection, but also helps to guide, shape and decide on future actions. Various studies have shown that the process of writing a narrative can help people to:

  • Understand and bring a sense of coherence to personal experience 
  • Express and find ways to deal with emotions 
  • Develop a sense of control or resolution that helps to let go of negative thoughts and feelings 
  • Improve physical health and wellbeing in general 
  • Find new knowledge and insight 

As part of an individuals’ recovery journey, capturing their story can allow for the attachment of order, structure and meaning to the events or experiences that have shaped their life and as such, can make dealing with the emotions of their lived experience more manageable. Writing can help convert emotions, images and thoughts into words, which can change the way a person organises and thinks about an experience.

Most importantly, story organises information in a way that helps us to connect with other people. The ‘Stories from Experience’ resource has been created to help start that journey of writing a story. Visit www.storiesfromexperience.com.au

References

Amering, M., & Schmolke, M. (2009). Recovery in Mental Health: Reshaping Scientific and Clinical Responsibilities. Recovery in Mental Health: Reshaping Scientific and Clinical Responsibilities. https://doi.org/10.1002/9780470743171   

Andresen, R., Oades, L., & Caputi, P. (2003). The experience of recovery from schizophrenia: Towards an empirically validated stage model. Australian and New Zealand Journal of Psychiatry. https://doi.org/10.1046/j.1440-1614.2003.01234.x

Baikie, K. A. (2005). Emotional and physical health benefits of expressive writing. Advances in Psychiatric Treatment, 11(5), 338–346. https://doi.org/10.1192/apt.11.5.338

Berkman, L. F., Glass, T., Brissette, I., & Seeman, T. E. (2000). Social Science & Medicine From social integration to health : Durkheim in the new, 51(1). https://doi.org/10.1016/S0277-Get

Cooper, P. (2013). Writing for Depression in Health Care. British Journal of Occupational Therapy, 76(4), 186–193. https://doi.org/10.4276/030802213X13651610908452

Donohue-Smith, M. (2011). Telling the whole story: a conceptual model for analysing the mental illness memoir. Mental Health Review Journal, 16(3), 138–146.

Federici, A., & Kaplan, A. S. (2008). The patient’s account of relapse and recovery in anorexia nervosa: a qualitative study. European Eating Disorders Review : The Journal of the Eating Disorders Association, 16(1), 1–10. https://doi.org/10.1002/erv.813

Grant, A., Biley, F. C., Leigh-Phippard, H., & Walker, H. (2012). The book, the stories, the people: An ongoing dialogic narrative inquiry study combining a practice development project. Part 2: The practice development context. Journal of Psychiatric and Mental Health Nursing, 19(10), 950–957. https://doi.org/10.1111/j.1365-2850.2012.01921.x

Hay, P. J., & Cho, K. (2013). A Qualitative Exploration of Influences on the Process of Recovery from Personal Written Accounts of People with Anorexia Nervosa. Women and Health. https://doi.org/10.1080/03630242.2013.821694

J.W., P., & J.D., S. (1999). Forming a story: The health benefits of narrative. Journal of Clinical Psychology.

Kawachi, I., & Berkman, L. F. (2001). Social ties and mental health. Journal of Urban Health, 78(3), 458–467. https://doi.org/10.1093/jurban/78.3.458

Kogstad, R. E., Ekeland, T. J., & Hummelvoll, J. K. (2011). In defence of a humanistic approach to mental health care: Recovery processes investigated with the help of clients’ narratives on turning points and processes of gradual change. Journal of Psychiatric and Mental Health Nursing. https://doi.org/10.1111/j.1365-2850.2011.01695.x

National Eating Disorders Collaboration. (n.d.). Stories from Experience. Retrieved from https://storiesfromexperience.com.au/dashboard/behind-the-scenes/%0A

Nilsson, K., & Hägglöf, B. (2006). Patient Perspectives of Recovery in Adolescent Onset Anorexia Nervosa. Eating Disorders, 14(4), 305–311. https://doi.org/10.1080/10640260600796234

Oades, L., Deane, F. P., & Anderson, J. (2013). Peer Support in a Mental Health Service Context. Manual of Psychosocial Rehabilitation, 183–193. https://doi.org/10.1002/9781118702703.ch14

Pennebaker, J., & Chung, C. (2011). Expressive writing and its links to mental and physical health. The Oxford Handbook of Health Psychology. https://doi.org/10.1093/oxfordhb/9780195342819.013.0018

Slade, M. (2009). Personal recovery and mental illness: A guide for mental health professionals. Personal Recovery and Mental Illness: A Guide for Mental Health Professionals. https://doi.org/10.1017/CBO9780511581649

Wilkinson, R., & Marmot, M. (2003). Determinants of Health. The Solid Facts. 2nd Edition. World Health Organiztaion, 2(2), 1–33. https://doi.org/10.1016/j.jana.2012.03.001

 

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Support for the Festive Season

Article 3 - The Festive Season: Support for when you need it

Over the festive season access to face-to-face support may become limited. With holiday celebrations involving food and socialising, a heightened sense of fear and anxiety may occur during this period for people experiencing or caring for someone with an eating disorder (Grilo et al., 2011).
Knowing what support services are available during this time can help individuals to manage their anxiety and implement strategies to overcome any challenges they may face. Being prepared with the right support tools will make the season as comfortable and enjoyable as possible. If you or someone you know is in need of support the below services are available:

Butterfly National Helpline
1800 334 673
Butterfly's National Helpline is Australia’s national eating disorders support service providing phone, email and web counselling for all those affected by eating disorders or body image concerns. People with an eating disorder, families, carers, friends and professionals can contact the Helpline for information, support and referrals.
e. support@thebutterflyfoundation.org.au
Online Chat: Open Chat Now 

Closed:
Mon 24 Dec - Wed 26 Dec 2018.
Tues 1 Jan 2019.
Mon 28 Jan *National public holiday

Open:
Thurs 27 Dec to Mon 31 Dec (8:00 AM – Midnight AEST)
Sat 26 Jan – Sun 27 Jan 2019

Eating Disorders Victoria Helpline
1300 550 236 
Eating Disorders Victoria Helpline is a free and confidential service providing support and information about eating disorders and related issues.
e. help@eatingdisorders.org.au
Closed: Fri 21 Dec 2018 - Mon 7 Jan 2019.  Normal Operating Hours: Mon to Fri, 9.30am – 5:00 pm AEST (except national/ major public holidays).

Beyond Blue
1300 224 636
Beyond Blue provides support for people with anxiety and depression and their families and friends.
Support Service: Contact Now
Online Chat: Open Chat Now  (7 days a week, 3pm-12am AEST)
24/7 Helpline (including public holidays).

SANE
1800 187 263
SANE help centre provides information, guidance and referral to help manage mental health concerns.
helpline@sane.org
Online Counselling:
Open Chat Now 
SANE Web Forums will continue to run throughout Christmas/New Year period.
Closed: All Helpline, Online and email services will be unavailable: Fri 21 Dec 2018 – Wed Jan 2 2019.
Normal Operating Hours: Mon to Fri, 10:00 am – 10:00 pm AEST (except national/major public holidays).

MensLine
1300 789 978
MensLine Australia is the national telephone and online support, information and referral service for men with personal, family and relationship concerns.
Online Counselling: Open Chat Now
Operating Hours: 24/7 Helpline and Chat including public holidays.

Qlife
1800 184 527
Qlife is the national counselling and referral service for Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) people.
Online Counselling: Open Chat Now
Operating Hours: 7 days a week, 3:00pm – 12:00 amAEST (including public holidays).

EMERGENCIES - If you or someone you know is in crisis please call one of the following:

Emergency Services
000
If you are experiencing immediate danger and/ or require medical assistance please contact emergency services.
Operating Hours: 24/7 including public holidays.

Lifeline
13 11 14
Lifeline provides all Australians experiencing a personal crisis with access to online and phone crisis support and suicide prevention services.
Online enquiries form
Crisis Support Chat: Open Chat Now (7 days a week, 7pm-4am AEST) 
Operating Hours: 24/7 Helpline including public holidays.

Suicide Call Back Service
The Suicide Call Back Service is a free, professional, 24 hour seven days a week national counselling service that provides free telephone and online counselling.
You can call anywhere and anytime.-1300 659 467
Contact via online form
Online Counselling: Open Chat Now
Operating Hours: 24/7 Helpline and Chat including public holidays.

Kids Helpline
Kids Helpline provides confidential counselling for kids and young people (ages 5-25) regarding all topics.
1800 551 800
counsellor@kidshelpline.com.au 
WebChat: Open Chat Now 
Operating Hours: 24/7 Helpline and Chat including public holidays.

EMERGENCIES - If you or someone you know is in crisis please call one of the following:

Emergency Services
000
If you are experiencing immediate danger and/ or require medical assistance please contact emergency services.
Operating Hours: 24/7 including public holidays.

Lifeline
13 11 14
Lifeline provides all Australians experiencing a personal crisis with access to online and phone crisis support and suicide prevention services.
Online enquiries form
Crisis Support Chat: Open Chat Now (7 days a week, 7pm-4am AEST) 
Operating Hours: 24/7 Helpline including public holidays.

Suicide Call Back Service 
The Suicide Call Back Service is a free, professional, 24 hour seven days a week national counselling service that provides free telephone and online counselling. 
You can call anywhere and anytime.-1300 659 467
Contact via online form
Online Counselling: Open Chat Now
Operating Hours: 24/7 Helpline and Chat including public holidays.


Kids Helpline
Kids Helpline provides confidential counselling for kids and young people (ages 5-25) regarding all topics.
1800 551 800
counsellor@kidshelpline.com.au 
WebChat: Open Chat Now 
Operating Hours: 24/7 Helpline and Chat including public holidays.

What to do with this information?

It may be useful to keep this information with you at all times and even print a copy to have at hand. Healthcare providers, practice managers and educators are encouraged to share or print a copy to keep in their office for referrals and professional support.

This information is useful for:
• People experiencing an eating disorder
• Families, friends and carers
• Health professionals
• Educators

This information may also be downloaded online from the NEDC website.

References

Grilo, C. M., Pagano, M. E., Stout, R. L., Markowitz, J. C., Ansell, E. B., Pinto, A., … Skodol, A. E. (2011). Stressful Life Events Predict Eating Disorder Relapse Following Remission: Six-Year Prospective Outcomes. International Journal of Eating, 1–8.

 

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Join the NEDC

Article 4 - Join NEDC in 2019!

Becoming a member of the NEDC is free, but the participation and support of our members is invaluable! If you are not yet a member, we would love to have you involved!

Another productive and successful year is almost over and the NEDC has another exciting year ahead. As we say goodbye to 2018 and enter 2019, it is the perfect time to become a member of the NEDC.

Why join?

As an NEDC member, you have the opportunity to become part of an eating disorders network: a community of people with expertise or an interest in eating disorders through which you will learn, contribute and engage in project activities.

Becoming an NEDC member enables shared learning, networking, and access to evidence-based research. NEDC members are valuable partners and key contributors to the development of improved approaches to the prevention and treatment of eating disorders in Australia. With the assistance of our members, together we will continue to ensure:

  1. Eating disorders are a priority mainstream health issue in Australia;
  2. A healthy, diverse and inclusive Australian society acts to prevent eating disorders;
  3. Every Australian at risk has access to an effective continuum of eating disorder prevention, care, and ongoing recovery support.

To become a member, simply fill out our online application form.

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Issue 6 | Current Australian Eating Disorders Research

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Issue 41 | Prevention and Protective Factors

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