Why eating disorder recovery is about more than what you eat or weigh

Recovering from an eating disorder can be long and complex.

Treatment typically focuses on reducing the unhelpful behaviours and thoughts that characterise these disorders. These include extreme dieting, binge eating, purging, negative body image, and – in some (but not all) cases – having a very low body weight.

But when recovery focuses on a clinical checklist of symptoms, such as reaching a healthy weight, it may ignore other important aspects of getting better.

Eating disorders are not just physical. They are complex mental health conditions that severely disrupt people’s relationship with themselves, their bodies and other people. So the psychological aspects of recovery, and the way people feel about it, also plays an important role.

Our new research shows when people’s broader wellbeing improves – such as developing a sense of self-acceptance or hope – they are more likely to report a “personal” recovery from an eating disorder, even if they still have some clinical symptoms.

How is recovery measured?

There is no one definition of eating disorder recovery.

But most research has focused on clinical symptoms. This means an absence of diagnostic criteria (for example, no binge eating or purging) over a specific timeframe, such as a 12-month period, to meet the definition of recovery.

Emerging research points to the importance of “personal recovery” meaning that dimensions of psychological wellbeing are essential.

For example, a 2020 review of studies focusing on perspectives of people with eating disorders showed supportive relationships, hope, identity, meaning and purpose, empowerment, and self-compassion were central to their recovery process.

People with eating disorders also report that including these as goals (rather than just focusing on clinical symptoms) feels relevant and empowering, while emerging research shows this can improve long-term outcomes and improve quality of life, meaning people may be less likely to relapse.

But there still hasn’t been much research on how both personal and clinical aspects can be incorporated into treatment and recovery.

Understanding how to include these aspects in treatment is urgent, given eating disorders are among the most life-threatening psychiatric disorders, and recovery is often slow.

What we did and what we found

Our new study surveyed 234 adults who have lived through or are currently experiencing an eating disorder. Most identified as female (89%), and the average age was 28.

Overall, we found less than a quarter of participants (22.6%) met the criteria for clinical improvement, meaning many were still dieting or preoccupied with food and body image.

But more than half (52.1%) felt they had achieved personal recovery. This included experiencing self-acceptance, positive relationships, personal growth, reduced eating disorder behaviours, resilience and greater autonomy.

Clinical improvement in symptoms did make personal recovery more likely. But nearly two-thirds (63.9%) of those who self-identified as personally recovered did not meet the clinical definition, meaning they still experienced some eating disorder symptoms.

This points to a possible disconnect between definitions of recovery that focus on symptoms and what recovery actually means to the people living it.

We also explored whether personal recovery looked different depending on someone’s eating disorder diagnosis.

All participants had a past or current diagnosis of anorexia nervosa (68.4%), bulimia nervosa (8.5%) or binge eating disorder (8.1%).

But, we found no meaningful differences in personal recovery rates across these diagnoses. This suggests the experience of personal recovery may be broadly similar regardless of the specific eating disorder a person has faced.

Why does this matter?

When treatment success is measured almost entirely through symptom checklists and clinical criteria, we risk missing – and failing to celebrate – the progress that may matter the most to the person in front of us.

We suggest people seeking recovery from an eating disorder should be asked early on about what recovery looks like to them, not just what the clinical guidelines say it should look like. This might also improve the currently low rates of people seeking help for eating disorders. It may help clinicians set goals that are meaningful and better reflect the psychological nature of eating disorders, not just the physical aspects.

If there’s something that feels important to your recovery, it’s worth raising with your treatment team. Recovery can look different for everyone, and your personal goals matter.

For example, wellbeing goals could involve reconnecting with relationships, rebuilding a sense of identity, or simply feeling more in control of daily life, alongside improving clinical symptoms.

This is also significant because funding for eating disorder services and policy decisions still often lean heavily on clinical benchmarks. If these don’t capture aspects of personal recovery, we are likely underestimating how many people are getting better, and potentially designing services around a narrower picture of recovery than the evidence actually supports.

If you have a history of an eating disorder or suspect you may have one, you can contact the Butterfly Foundation’s national helpline on 1800 334 673, or via online chat.