Rose and Amélie

Anecdotes and Studies of Lived Experiences with Obesity

People want to be seen and heard. To feel like they matter. But in research and policy related to obesity, this fact was long neglected for many reasons. The principal reasons have much to do with stigma and the explicit dehumanization of people with this disease. With explicit efforts to overcome these issues, we see progress. Researchers and policymakers are placing greater value on lived experiences with obesity – most often in anecdotes and less often with systematic studies.

Still though, excessive reliance on anecdotes brings the risk of tokenism to these efforts.

Systematic Studies

If it were not for the blinding effects of implicit bias and stigma, a systematic understanding of living with obesity should not be so hard. After all, nearly half the population lives with it. But truthfully, we can find few efforts to move beyond anecdotes about lived experiences with obesity and delve deeply into studies of it. In a 2021 systematic review and synthesis, Emma Farrell and colleagues tell us:

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

“This synthesis reveals the dearth of studies that focus solely on the experience of the patient and highlights the tendency for participant-informed, rather than participatory, methods in obesity research. It concludes with a call for further participatory research into the experiences of people living with obesity.”

In fact, researchers are barely scratching the surface of these lived experiences. It will be harder than they imagine to study the full breadth of lived experiences with obesity because those experiences are so diverse. The large population that lives with obesity experiences it in many different ways.

Weight

Scientists now know that obesity is definitely not a simple problem of excess weight – a problem that people can overcome with sufficient willpower. But we have spent decades listening to people who are living with it. From that experience, we can have no doubt that this is the most common personal perception of obesity in the general population. Many of these people, though they are living with obesity, respond to the word obesity with the revulsion that befits a highly stigmatized disease. “Those are people who have a bigger problem than I do. I simply need to lose some weight.”

A Chronic Disease

However, a growing segment of the population is beginning to embrace the scientific reality of obesity as a chronic disease. Thoughtful science reporting by people like Gina Kolata, Julia Belluz, Karen Weintraub, and Stephan Guyenet is helping. It also helps that medical options for obesity are leaping forward in effectiveness. People are more inclined to face a problem when solutions are available to them.

People who experience obesity as a chronic disease understand and face the effects it is having on their health and quality of life. They are seeking solutions and high quality medical care.

An Identity

There is also a segment of people who respond to the stigmatization of obesity by completely rejecting it. Ob*sity is a trigger word – not to be spoken. They claim fat as an identity and seek to strip that word of the power to harm them. This lived experience often comes with a conviction that the medical concept of obesity is not valid. So it can be hard for obesity researchers to incorporate this perspective into their understanding of the full spectrum of lived experiences with obesity.

After all, is it really a lived experience with obesity if a person utterly rejects obesity as anything but an epithet?

Barely Scratching the Surface

So clearly, most all of us are barely scratching the surface of lived experiences with obesity – relying more on anecdotes than disciplined studies of it. Not one of these highly personal lived experiences are the right or wrong way to experience this condition. The diversity of them is simply a matter of fact that we need to better understand and respect.

Click here for the systematic review by Farrell et al, here and here for for additional studies of lived experience with obesity. For insights on methods for lived experience research, click here and here.

Rose and Amélie, painting by Edvard Munch / WikiArt

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March 19, 2023

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