Self-Reported Data Highlight Gaps in Eating Disorder Diagnosis

New research is shining light on the many different behaviors people engage in to lose weight — some of which, such as wearing compressive clothing, may be overlooked in traditional eating disorder diagnoses.

“As with all areas of human behavior, weight loss behaviors utilized by those living with eating disorders evolve over time,” said lead investigator Saakshi Kakar, a Ph.D. student at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London. “Individuals may adopt new practices, sometimes driven by trends, accessibility or misconceptions about health.”

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The study, published in the International Journal of Eating Disorders, analyzed the experiences of more than 1,600 participants in the U.K. with anorexia nervosa, bulimia nervosa or binge-eating disorder, using open-ended survey responses from two large studies: the Genetic Links to Anxiety and Depression (GLAD) Study and the Eating Disorders Genetics Initiative UK (EDGI UK).

The team used semistructured interviews, which provide better insight into diagnosing eating disorders, to assess food restrictions, the use of laxatives or diuretics, excessive exercise and other dysfunctional weight-control behaviors. They also examined demographic characteristics such as age, gender, ethnicity, education and sexuality.

Among participants, most (94.8%) were women with an average age of 31.7 years. Approximately one quarter were diagnosed with anorexia nervosa, and about half had bulimia nervosa.

What makes this study unique is that it didn’t just look at textbook symptoms — it explored real-life behaviors that people reported in their own words. Some commonly shared actions included following strict diets (mentioned by 619 participants) and counting calories (422 participants). But the researchers also discovered other, less expected behaviors, such as wearing tight or compressive clothing to change body shape (147 people) and even using self-harm as a coping mechanism (88 people).

To make sense of these responses, the researchers grouped the behaviors into four main categories:

1. Restriction-based approaches (such as skipping meals or cutting out entire food groups),
2. Medical interventions (including medications or unmonitored supplements),
3. Body manipulation (such as using tight clothing or posture changes), and
4. Food avoidance (avoiding certain foods or eating situations altogether).

Interestingly, these behaviors were seen across all types of eating disorders and in both men and women — showing that many people share similar experiences, even if their diagnosis differs. For example, while binge-eating disorder isn’t usually linked with weight-loss behaviors, 81 people with this condition reported taking compensatory actions like those seen in anorexia or bulimia.

The findings suggest that current diagnostic tools may not capture the full spectrum of behaviors people use, potentially leading to missed or delayed diagnoses. By better understanding these lesser-known behaviors, a patient’s care team can improve how they assess and treat eating disorders — leading to better support for patients.

The study also points out the need for more research in diverse populations, as most of the current participants were from similar backgrounds.

This study stands out for its open-ended, qualitative approach that allowed participants to honestly describe a wide range of weight loss behaviors — many of which fall outside current diagnostic criteria. It also benefited from a large, diverse participant pool. However, the research didn’t measure whether these behaviors caused distress or posed health risks, and some responses were unclear or focused on weight gain rather than loss.

“Our findings show that we must move from focusing on commonly known behaviors to a more inclusive assessment process that expects and accommodates a wider range of behaviors,” wrote Kakar. “Working with people with lived experience will help ensure that these evolving behaviors are recognized and incorporated effectively into clinical practice and research.”