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What Is 'Recovery' From An Eating Disorder?

What we know from research and experience.

Bubbles under water
Photo credit: Dan Meyer
 

by Kate Sweeney


“What is ‘recovery’?” is the number one question I get from clients struggling with disordered eating/eating disorders.


Clients ask:

  • Is recovery possible?‘

  • How do I know I’m there?’

  • When will I know I’m there?‘

  • What will my life look like then?’


Recovery is something to grasp, to have hope for, to look towards.


Defining recovery matters because people often struggle with eating disorders for years, decades and sometimes, a lifetime.


A recent rapid review by Miskovic‐Wheatley, et al (2023) of 116 studies on ED treatment outcomes identified recovery rates ranging between 18% and 60% for anorexia nervosa and an average length of illness of between 6.5 and 14 years. For individuals with binge/purge symptoms like in bulimia nervosa, recovery rates were found to be between 35-59% and for binge eating disorder, 37-77%.


These ranges highlight that treatment outcomes are measured very differently across studies and that symptom resolution, the most commonly used sign of recovery in the research, is not the reality for many suffering from EDs.


The latter point brings up the idea of harm reduction, and helping people reach a lessening in symptoms that allows for improved quality of life.


There is no one definition of “recovery”.




 

What does the research tell us about recovery?


First, improved physical health as measured by clinical indicators like vital signs, labs, weight restoration or symptom severity and frequency like the cessation of purging are the most common ways recovery has been defined in the literature.


While clinical indicators may improve prior to cognitive ones, as a more nourished brain can be less anxious and more cognitively flexible, clinical indicators are also side effects of improved psychological health and overall wellbeing.


Second, it is important to point out limitations of this research. While there is research on eating disorder recovery, most of it has been done in a very small subset of people with eating disorders and for a limited duration of a few weeks to 1 year.


This population is generally white, female-identified, upper/middle class, between the ages of 20-35 years old and with a diagnosis of anorexia nervosa.


Further, most recovery studies are on individuals who have gone to a higher level of care like residential treatment, rather than individuals who have engaged with other types of treatment or no standardized treatment at all.


Recovery research does not include diverse groups - like males, veterans, LGBTQAI+, older than 35 years old, living in larger bodies, people of color, those living in rural areas or neurodiverse populations. It also does not include those with poor insurance coverage and of low socioeconomic status.


This lack of inclusivity of participants in studies make it hard to interpret their findings as reflective of most who go through ED care and recovery.


Lastly, it is important to ask what is being studied and how.


A study by Hower, et al (2022) focused on current and potential methods of recovery research. It is a wonderful study if you’re looking to learn more about current limitations and strengths of what is available, as well as future recommendations.


The researchers recommend incorporating qualitative and quantitative research methods along with behavioral, laboratory, and creative methods to explore recovery. The study also recommends broadening the populations studied and including providers, family members and others while also increasing the time these populations are studied.


With more research, we may find a more nuanced and inclusive understanding of ‘recovery’.


Themes of Recovery


Despite research limitations, there are indicators of recovery that are applicable to some people.


  1. Recovery is not linear, simple or perfect


Perhaps having one definition of 'recovery’ is actually a problem in and of itself.


As LaMarre and Rice (2021) point out in their qualitative study that interviewed 20 participants who have struggled with eating in some way, recoveries are not linear and ‘messy’. The process of recovery is itself “embedded in a system of power and invokes privilege”.


Many stories around ‘recovery’ illustrate it as achieving some perfect place, where all thoughts and symptoms are gone, where one ‘loves their body’ and where one finds their ‘true self’.


However, the individuals in the LaMarre and Rice (2021) study describe their recoveries within  social, cultural, economic and relational frames. That defining recovery may actually result in a narrow definition that does not take into account our complex lives and environments.


Our recoveries are as diverse as our lives themselves.


  1. Finding Identity Outside of the ED


When one has an eating disorder, it can become an identity.


ED provides existence and purpose, when this is not accessible to someone in their life otherwise. EDs can provide control, structure, familiarity, relief, a way to handle uncomfortable emotions and more.


It can feel necessary for survival.


Espíndola and Blay’s (2009) comprehensive meta ethnographic review of 24 articles illustrated that one theme of recovery is recognizing the ED as identity and then (re)building identity outside of the ED through regaining life.


In LaMarra and Rice’s study (2021), they identified a formative event in recovery as distance between the ED identity and other parts of life. For instance, a participant named Elizabeth explained they needed “to move beyond the eating disorder and recovery identity as core to her being by reflecting on her larger life goals and how those interacted with the disorder. Recovery was thus enabled by focusing on other aspects of life.”


Certainly, the way we engage with ourselves and the world is greatly influenced by our environment and experience, which includes factors such as societal norms, financial opportunity, technology, the people close to us, our upbringing, career/school, interests and more. Often times, recovery involves shifting these relationships and perhaps, even going against the status quo.


Learning to find other ‘ways of being’ and orient oneself to the world can help shed ED as an identity, and is one way of thinking about recovery.


  1. Other themes: Self-acceptance, autonomy, positive relationships with others & more


According to a recent meta analysis by de Vos, et al (2017), which looked at 18 qualitative studies to identify criteria for recovery according to those who are recovered, the researchers found that psychological wellbeing and resilience were key to ‘recovery’ with more specific criteria denoted on the graphic below: self-acceptance, positive relationships, personal growth, decrease in eating disorder behavior/cognitions, self-adaptability/resilience and autonomy.


Other research also shows a feeling of autonomy, empowerment (Espíndola & Blay, 2013), and the ability to self-reflect (Dawson et al., 2014; Lindgren et al., 2015) as important factors in recovery.


My Experience as a Clinician


How do I answer ‘what is recovery?’ when asked?


I ask questions and explore:

  • What do you want it to look like?

  • How do you want it to feel?

  • What would tell you that you’re there?

  • What is realistic?

  • Do you see recovery as an end-point or an ongoing process?


Asking these questions can help you determine what recovery can look and feel like for you.


How you feel, regulate emotions, deal with adversity, navigate relationships, take risks, behave and express your sense of self can provide information on how you’re doing.


I tend to see a shift towards healing when clients create space between thoughts and behaviors, provide self-compassion, try something different and are willing to sit with discomfort. This may be eating fear foods, eating more adequately or reducing shame after a binge. It may also mean choosing a different place to live, or a different career path.


I see a ‘letting go’ of the ED rules and shame/guilt, while simultaneously creating healthy boundaries (like saying ‘no’ to friends to please them) and structure (like not delaying breakfast and eating enough at meals).


I see a reduction in treating the body as an external entity, like a house that needs fixing. And, instead, an acceptance that the body is not a project to be worked on, but to be cared for.


In client’s that study abroad, I observe a willingness to ‘try on other glasses’ and see first-hand that their ‘way of being’ is not the only option.


I see athletes explore other areas of their life and create an identity that is no longer embedded only in the athlete experience.


I do not define the threshold through which someone crosses between ‘unwell’ and ‘well’ or ‘not recovered’ and ‘recovered’. This is up for you to define.


Closing Thoughts


The term ‘‘recovery’’ itself may be problematic, as it moves people toward an experience deemed ‘normal’ (Howell and Voronka 2012), which is a socially constructed place, and possibly unavailable or even undesirable place to some.


Perhaps ‘recovery’ is not fully definable.


Perhaps it is much more subjective and results in a kaleidoscope of different interpretations by those of us going ‘through it’.


So where do we end up with ‘recovery’?


I strongly believe that ‘recovery’, as defined by you/the individual, is possible.


For now, these are my definitions:

  • Taking a different path than usual and not knowing where you will go or what will happen, but knowing it will allow you to experience yourself in full.

  • Embracing the uncertainty of life and the certainty of being human.

  • Seeing who you become over time.


With hope,

Kate


Resources:


  • Dawson, L., Rhodes, P., and Touyz, S. “Doing the impossible”: the process of recovery from chronic anorexia nervosa. Qual Health Res. 2014; Apr;24(24):494-505.

  • de Vos, et al. Identifying fundamental criteria for eating disorder recovery: a systematic review and qualitative meta-analysis. J of Eat Disord. 2017;5:34.

  • Espindola, C and Blay, S. Long term remission of anorexia nervosa: factors involved in the outcome of female patients. PLoS One. 2013;8(2):e56275.

  • Howell, A and Voronka, J. Introduction: The Politics of Resilience and Recovery in Mental Health Care. Studies in Social Justice. 2023.6(1):1-7.

  • Hower, H., et al. Conceptualizing eating disorder recovery research: Current perspectives and future research directions. Journal of Eating Disorders. 2022.10:165. https://doi.org/10.1186/s40337-022-00678-8.

  • LaMarre, A., and Rice, C.  Recovering Uncertainty: Exploring Eating Disorder Recovery in Context. Cult Med Psychiatry. 2021. 45:706–726.

  • Lester, R. Famished: eating disorders and failed care in America. Oakland, California : University of California Press, [2019].

  • Lindgren, et al. A qualitative study of young women’s experiences of recovery from Bulimia Nervosa. J of Advanced Nursing. 2014;  https://doi.org/10.1111/jan.12554

  • Miskovic-Wheatley, J., et al. Eating disorder outcomes: findings from a rapid review of over a decade of research. Journal of Eating Disorders. 2023.11:85.

  • Morgan Eaton, Carrie. Eating Disorder Recovery: A Metaethnography. Journal of the American Psychiatric Nurses Association. 2020, Vol. 26(4) 373–388

  • Vall E, Wade TD. Predictors of treatment outcome in individuals with eating disorders: a systematic review and meta-analysis. Int J Eat Disord. 2015;48(7):946–71.

  • Venturo-Conerly, K., et al. Why I recovered: A qualitative investigation of factors promoting motivation for eating disorder recovery. Int  Jour of EDs. 2020. DOI: 10.1002/eat.23331

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