Making the Lived Experience of Obesity Invisible

The lived experience of obesity has many dimensions, but one of the most troubling is being invisible. Melanie Bahlke, a remarkable patient advocate from Frankfurt, Germany,  explains it beautifully:

“I am used to being talked about more than having people talk to me. For everyone I am something different and I am rarely what I am: a person who deserves respect. Not because I earned it. No one should have to earn respect. Everyone should simply receive respect.”

Overlooked in Research

New research in Obesity Reviews provides a compelling accounting of this. It is the first of its kind – an exhaustive search, review, and synthesis of research into the lived experience of obesity. Five themes surface in this research. But the most striking finding was over-arching. The authors found a “dearth of qualitative studies that focus on the experience of the patient rather than the agenda of the researcher.”

It seems that even to people who devote their work to studying obesity, the lived experience of people with this disease is largely invisible. Emma Farrell and a talented group of researchers from University College Dublin published this new paper. Joe Nadglowski of the Obesity Action Coalition was also an author. Their paper makes it clear that overlooking the lived experience of people with obesity is a huge mistake:

“The testimony and perspectives of those living with obesity represents one of the most important and powerful tools in healthcare.”

Five Themes

The first of five themes that Farrell and her colleagues found was all about the development of obesity, which is quite different for different individuals. Then there was the accounting of limitations that this disease brings. “Vivid and jarring” accounts of stigma, judgment, blame, and shame comprise the third theme. Accessing treatment, the fourth theme, had strong links back to the theme of stigma because of the difficulty of getting adequate medical care.

The final theme, specific minority group experiences, makes it clear that gender, ethnicity, and factors of social and economic status have tremendous impact on the lived experience with obesity.

Making the Invisible Visible

On NPR recently, clinical psychologist Rachel Goldman described how patients experience dramatic shifts in how the world treats them after bariatric surgery. Goldman reminds us that all patients are unique, but for some patients who lose large amounts of weight, the experience is quite jarring:

“It really affects their mental health, their self-image and self-confidence, trying to understand, ‘How did somebody see them so differently before?’”

All of this drives home a basic point. The experience of living with obesity can have an overwhelming effect on a person’s health and everything we do. Yet this fact hides in plain sight. We live in an invisible caste system based on a person’s weight. Even obesity research often looks past it.

This must change.

Click here for the new research from Farrell et al, here for the interview with Goldman, and here for further perspective from Bahlke.

Melanie Bahlke, portrait © Gregor Wildförster, Fiddler of light / via Facebook

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August 18, 2021