Addressing the Elephant in the Room: Supporting Eating Disorder Clinicians with Eating Disorder Lived Experience

In this blog, Clinical Psychologist, PhD Candidate and Lived Experience Advocate Pheobe Ho discusses her upcoming research.

The limited research available has shown that approximately one quarter to half of eating disorder clinicians have a lived experience of an eating disorder.

Over the last decade, there has been increased recognition on the importance of involving Lived Experience voice at the heart of eating disorder service delivery and care.

While the eating disorder field has progressed significantly in providing role clarity and support for people in designated Lived Experience (LE) roles, it remains unclear how clinicians who themselves have a lived experience can be best supported. The lifetime prevalence of eating disorders among eating disorder clinicians is estimated to be between 24-47%.^1-7 This contrasts with the 2.2% and 8.4% global lifetime prevalence of males and females respectively in the general population.⁸

There may be significant stigma and shame among clinicians who have lived experience of an eating disorder. Carolyn Costin, a renowned Lived Experience Therapist in the US, first acknowledged the need to develop guidelines to support clinicians with lived experience in 2002. While over 20 years have passed, guidelines have not yet been developed. The field is also yet to develop a robust understanding of help-seeking and disclosure experiences among clinicians with eating disorder lived experience.

About the Researchers

I am a WA-based Clinical Psychologist working in eating disorders. I have worked in various designated Lived Experience advocacy and policy roles over the past 10 years prior to training clinically. I am currently undertaking my PhD at Curtin University, alongside Professor Sarah Egan, Professor Peter McEvoy, and Dr Beth Swann. My PhD is not about requiring eating disorder clinicians to disclose their lived experience. Rather, it aims to better understand the experiences in the workplace of clinicians with lived experience, as well as the perception of them by colleagues and managers. This will lead to improved understanding of the challenges they may need to navigate when deciding whether to disclose their lived experience to colleagues and managers, and how workplaces can best support them in providing safe and ethical practice.

Over the past 10 years, I have heard from students wanting to apply for postgraduate allied health programs to later work in eating disorders, but who are reluctant to apply due to fears that they will be denied entry into their profession or field. I continue to hear similar threads from eating disorder clinicians across Australia about their experiences of stigma, shame, or fears of judgment should they decide to seek help or disclose their lived experience. These observations had prompted me to write a previous Butterfly blog article on being a clinician with lived experience to hopefully inspire them to pursue work in this area.

Through my own and others’ anecdotal experiences, key ethical dilemmas have arisen. While there is no one ‘right’ answer, it begs our field to come together to guide navigation of the following dilemmas:

• Should a clinician with lived experience disclose in the workplace to colleagues, supervisors, managers, and if so, what would the reasons for disclosure be (e.g., wish to seek workplace accommodations)?
• What minimum supports should a workplace or manager provide if a clinician discloses their own lived experience (e.g., what are reasonable workplace accommodations; how can ethical obligations for safe work practices be met?)
• Should a clinician with lived experience disclose to clients if they ask, and if so, what would the reasons for disclosure be?
• How does a clinician navigate dual relationships, if they are working alongside previous treating clinicians in the same service they received treatment at previously?
• What should a clinician with lived experience do, if they are becoming triggered by a client, or over/under-identifying with a client they are treating? When this occurs, to what extent should supervisors explore the impact of the clinician’s lived experience on their work?
• What are the role boundaries between designated Lived Experience (e.g., peer workers) and non-designated lived experience (clinicians with lived experience) roles?
• How do you approach a colleague if you think they are unwell, without commenting on their weight/appearance, because that may serve to perpetuate unhelpful beliefs that eating disorders are only about weight/shape?
• How would you approach a manager or supervisor if you think they are unwell, considering the power imbalance present?
• If colleagues are aware of a clinician’s lived experience, will they misattribute underperformance/unexpected leave to the eating disorder, and how does the clinician with lived experience manage colleagues’ perceptions of ‘wellness’?
• If you have living experience of an eating disorder, should you continue to practice? How would you navigate dual relationships if you sought group treatment at a service that your client also attends?

A Vision for the Future

By better understanding the experiences of eating disorder clinicians with lived experience, we can help eating disorder organisations, managers, supervisors, and colleagues have supportive and appropriate conversations with colleagues.

Together, we can grow a mentally healthy, sustainable eating disorder workforce by ensuring clinician wellbeing and safety, for the benefit of clients. We hope that this research will inform our development of guidelines supporting safe, ethical practice for clinicians with lived and living experience in the near future.

Get Involved in Our Current Research

Our research team, with support from NEDC, InsideOut Institute, Butterfly Foundation, and ANZAED, have just launched a study to understand how to better support eating disorder clinicians with eating disorder lived experience.

We are looking for any allied/medical health professionals aged 18+ (with AND without lived experience), who work in eating disorders in Australia.

The online survey is anonymous and will take 20 minutes to complete. It will ask about stigma, shame, and mental health disclosure among eating disorder clinicians with AND without eating disorder lived experience.

Click here to learn more and participate: https://curtin.au1.qualtrics.com/jfe/form/SV_4NKy2wlHph8sQL4

If you have any questions about the study and/or your participation, contact Pheobe.Ho@postgrad.curtin.edu.au. This project has received ethics approval from Curtin University HREC (HRE2025-0168).

 

Written by Pheobe Ho, Clinical Psychologist, PhD Candidate, & Lived Experience Advocate.

 

Get Support

For support with eating disorders or body dissatisfaction, connect with the Butterfly National Helpline by calling 1800 ED HOPE (1800 33 4673) or visit www.butterfly.org.au to chat online or email, 7 days a week, 8am-midnight (AEST).

 

References

1. Barbarich, N. C. (2002). Lifetime prevalence of eating disorders among professionals in the field. Eating disorders, 10(4), 305-312. https://doi.org/10.1080/10640260214505
2. Bloomgarden, A., Gerstein, F., & Moss, C. (2003). The last word: a “recovered enough” therapist. Eating disorders, 11(2), 163-167. https://doi.org/10.1080/10640260390199370
3. Costin, C., & Johnson, C. (2002). Been there, done that: clinicians’ use of personal recovery in the treatment of eating disorders. Eating disorders, 10(4), 293-303. https://doi.org/10.1080/10640260290081722
4. de Vos, J. A., Netten, C., & Noordenbos, G. (2016). Recovered eating disorder therapists using their experiential knowledge in therapy: a qualitative examination of the therapists’ and the patients’ view. Eating disorders, 24(3), 207-223. https://doi.org/10.1080/10640266.2015.1090869
5. Johnston, C., Smethurst, N., & Gowers, S. (2005). Should people with a history of an eating disorder work as eating disorder therapists? European eating disorders review, 13(5), 301-310. https://doi.org/10.1002/erv.659
6. Warren, C. S., Schafer, K. J., Crowley, M. E. J., & Olivardia, R. (2013). Treatment providers with a personal history of eating pathology: a qualitative examination of common experiences. Eating disorders, 21(4), 295-309. https://doi.org/10.1080/10640266.2013.797318
7. Williams, M., & Haverkamp, B. E. (2015). Eating disorder therapists’ personal eating disorder history and professional ethics: an interpretive description. Eating disorders, 23(5), 393-410. https://doi.org/10.1080/10640266.2015.1013393
8. Galmiche, M., Déchelotte, P., Lambert, G., & Tavolacci, M. P. (2019). Prevalence of eating disorders over the 2000–2018 period: a systematic literature review. The American journal of clinical nutrition, 109(5), 1402-1413. https://doi.org/10.1093/ajcn/nqy342