Learning from People with Lived Experience

What makes the difference between recovery and relapse for people with eating disorders?

Though we have treatment approaches known to help people with anorexia nervosa and other restrictive eating disorders improve their weight and correct other physical, emotional, and psychological markers of starvation, relapse remains a remarkable problem. Based on recent estimates, upwards of 50% of those who receive intensive eating disorder treatment may relapse in the six months to one year following hospitalization.

REACH+, a telehealth relapse prevention study, aims to help people during this critical window in their recovery.

When the team got to work developing REACH+, we decided to ask the people who know best what it took to get well and stay well – those with lived experience who had done it. A subset of prior patients who continue to volunteer their time in an ongoing long-term follow-up study agreed to sit down (over Zoom) and help us help others.

We held two focus groups, with three to four participants per group, to hear people’s perceptions of what was – and was not – helpful with recovery in the shorter- and longer-term. Here is what we learned:

What helped?

Clear themes emerged about what helped people continue to make progress with their symptoms, and in their lives. People described how important it was to find a passion and develop an identity outside the eating disorder. A few individuals specifically noted that listening to recovery narratives from others with lived experience of an eating disorder helped them envision a future without symptoms and understand what the process could be like.

The three components critical to enhanced cognitive behavioral therapy (CBT-E), a first-line treatment for eating disorders — behavior change, cognitive strategies, and psychoeducation — were reflected in specific examples of approaches people found helpful in the short term. For example, focus group participants noted how essential it was to keep working on behavior change by interrupting routines that maintain the eating disorder. Some liked working with a therapist on eating more regularly and flexibly and others preferred doing that work with a dietitian. Everyone reflected on ways they distanced themselves from eating disorder related thoughts, including using metaphors to better tolerate these thoughts, shifting focus, and creating space for reflection by journaling.  

Last but not at all least, people benefited from feeling empowered in their treatment, for example by having a say at the time in what elements of therapy they believed to be most useful.

What didn’t help?

For those who had developed anorexia nervosa long ago, conventional approaches to recovery were found to be unhelpful, especially if the care was experienced as rigid or unintentionally conveyed hopelessness about the chance for real recovery.

Several issues related to difficulties with care emerged during our discussion. First, many people spoke about a general lack of access to adequate treatment options following hospitalization due to geographical location or limitations in insurance coverage. Second, even when people did connect with treatment, we heard about elements of the care that made recovery additionally challenging. While we know that eating disorders specialists and other providers are unfortunately not immune from biased attitudes and assumptions about weight and recovery, in our focus groups, we heard firsthand about ways that a few individuals had been negatively impacted by insensitive or stigmatizing comments. (If you are a provider, read more about addressing weight bias here.)

Who helped?

Unsurprisingly, many recovered individuals spoke about the many sources of support that helped them reach and maintain recovery. People specifically mentioned significant others, family, pets, and other individuals with eating disorders.

For more on how to harness your network to support recovery following intensive treatment, see this related post.

Other Feedback

People also provided feedback on elements of the ongoing REACH+ study.

We heard about the pros and cons of telehealth. Some folks favored it for its convenience and helpfulness in increasing access to eating disorders specialists; others voiced concerns about their ability to be transparent with a therapist if seeing them virtually.

We also heard a range of perspectives on weighing during treatment. Some felt weighing helped them understand that weight was “just a number” and that the act of monitoring weight encouraged accountability for recovery even after treatment. Others agreed with the importance of weighing during treatment and for a few months into recovery but stressed the importance of not weighing after that. For this subgroup, checking weight was a behavior connected to their eating disorder and strengthened the idea that the numbers mattered.    

Given the medical dangers of anorexia nervosa and atypical anorexia nervosa, weight monitoring is currently considered best practice in treatment. However, there is some research underway in the field to study potential benefits of different approaches to monitoring (for example, closed versus open weight).  

Next Steps

Meeting with this network of recovered patients was invaluable, and we hope to do it again soon. We are currently working on a project to more routinely connect and collaborate with past patients to help us shape our future research initiatives advancing the treatment and understanding of eating disorders. Look out for more information from us soon!

For a closer look at our publication, read here:

Pagano, N., Glasofer, D. R., Attia, E., Ruggiero, J., Eziri, K., Goldstein, C. M., & Steinglass, J. E. (2023). Perspectives on relapse prevention following intensive treatment of anorexia nervosa: A focus group study. The International journal of eating disorders56(7), 1417–1431. https://doi.org/10.1002/eat.23952

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