There is currently no standardised criteriaor longstanding eating disorders (also known as severe and enduring eating disorders, or SE-EDs).

However, the most common defining criteria relates to the duration of the disorder (usually 10 years+) and that attempts at treatment have thus far been unsuccessful. 

Whilst the limited amount of research focuses on Anorexia Nervosa, a longstanding eating disorder can occur in any eating disorder diagnosis. 

Everybody’s experience of a longstanding eating disorder is different, however common themes in research demonstrate:  

• severe loss of quality of life
• increased fear
• decreased social cognition
• anxiety
• problems with work (gaining and maintaining)
• difficulty with social adjustment and interactions
• dysfunctional emotion processing

For too long, people with longstanding eating disorders have felt like they don’t ‘fit’ anywhere in the health system.

Evidence shows that, after the 10-year mark, a longstanding eating disorder can become more challenging to treat, particularly when treatment is weight and/or recovery-focused.

Individuals can develop more rigidity in attitudes due to repeated treatment failures; stigma and labels from medical professionals that they are ‘treatment resistant’; or a loss of faith in the medical system.

This can result in the cycle of reinforcement that “I’m too sick to get better” or “mo treatment will work for me”. But at EDV, we believe people don’t fail treatments; treatments fail people.

The SE-ED Support Group gives people the opportunity to draw upon the support, experience and skills of others facing similar SE-ED issues. It is an open space to discuss what you are struggling with, reflect on current challenges and discuss coping tools.

How are groups run?

Groups are held online via Zoom and participants are required to register beforehand. Groups are free to attend, thanks to the support of the Victorian Government.

Who runs the groups?

All EDV facilitators have personal lived experience with an eating disorder or have been a carer. Some are working professionally or studying in fields such as counselling, peer support and psychology. You can find profiles of some of the facilitators below.

Do I need to book?

Yes, we require you to book in if you are planning on attending.

We honour your time and the time of our facilitators. If we need to cancel a group for any reason we want to give you as much notice as possible to minimise inconvenience. Support groups do not run if less than four people are booked in, and in that instance, we would contact you to advise that it is not going ahead and offer one-to-one support to you via the EDV Hub.

If you know that you are unable to make a group, please let us know. You can do this by cancelling your booking up to 24 hours before the event or by contacting the SE-ED team at [email protected].

Facilitators

Richard works at Eating Disorders Victoria as a social worker within the Severe and Enduring Eating Disorders (SE-ED) program. Within this program Richard co-facilitates Education workshops, is a peer mentor and provides one-on-one counselling.

Melanie (Mel) is the Coordinator of Eating Disorder Victoria’s Hub service. Within this role, Mel oversees the daily operations of the Hub, manages the Hub volunteer team and provides peer support to the community. Mel is also the REACH support group facilitator.

This self-paced, online course has been built to support people who identify as experiencing a longstanding eating disorder. It covers a range of topics, and lived experience perspectives from people who have recovered from a long-standing eating disorder.

Topics include:

• Quality of life: you don’t have to wait until you’ve ‘recovered’ to live a life that’s meaningful and peaceful for you.
• Diversity and intersectionality: the unique parts of you are a strength.
• Creating a sensory self-care plan.
• Perfectionism (and how to challenge it).
• Body neutrality, for when ‘loving yourself’ feels like a challenge or just not relatable.
• Stigma and shame: unpacking guilt, without judging yourself.
• Holding space for grief and loss for what the eating disorder has not allowed you to do in life.
• Sitting with setbacks and relapses.
• Cultivating hope!

Carers, support people and health professionals may also find this course useful.