What is it Like to Live with Obesity?

Although I have spent the last 25 years helping patients manage their obesity, I have never had obesity myself (at least not based on BMI). Everything I know about what it must be like living with this chronic disease, I have learnt from what my patients have told me. 

Obviously, this is a biased sample, as I have mainly seen patients with more severe obesity and those fortunate enough to have access to an obesity clinic. 

So, what is it really like to live with obesity?

This is the topic of a systematic review by Emma Farrell and colleagues published in Obesity Reviews.

The study included findings from 32 peer-reviewed studies relating to the lived experience of patients with obesity. 

Overall, fiive “third-order constructs” or themes emerged from their ethnographic analysis related to 1) the development of obesity, 2) a life limited, 3) stigma, judgment, shame, and blame, 4) treatment and 4) experiences of specific or minority groups. 

Interestingly, the researchers actually involved people living with obesity to inform and validate their synthesis. Thus, once the third-order constructs had been identified and described, the researchers met with the study’s Patient Advisory Board (PAB) to discuss the findings and to provide a “phenomenological nod” if advisory board members could relate to the synthesis, recognizing it as an experience that they have or could have had.

With regard to the development of obesity, people living with obesity had a wide range of individual experiences to share. While some reported having been heavy since earliest memory, others reported a steady progression, often in response to a major life event. Other reported contributors ranged from negative emotional states and adverse life experiences to genetic predisposition, social pressures, physical environments and sometimes medications. Virtually all experienced weight cycling, often attributable to dieting. 

Obesity clearly was a major limiting factor in many people’s lives, leading to social disconnection as well as restrictions in movement, activities, and opportunities. Many participants described a sense of having to put life on hold. Complications of obesity such as diabetes, high blood pressure, and musculoskeletal pain curtailed many participant’s ability to be active and participate in aspects daily life. Judgment, by self and others, was identified as a major contributor to social isolation and the life-limiting effects of obesity.

Indeed, experiencing stigma, judgment, shame, and blame was one of the most pervasive and consistent themes to emerge from the analyses. Thus, living under the critical gaze of others and being judged as not being good enough, not trying hard enough,being lazy, and/or undeserving of respect was a common issue.

With regard to treatment, sub-themes including difficulties accessing appropriate obesity care, but also negative treatment by healthcare providers—ranging from a lack of respect and compassion to examples of verbal insults, inappropriate humor, unmet healthcare needs, and breaches of dignity.

Finally, virtually all of these issues were amplified in ethnic or other minorities. A particular issue was the failing alignment of “Western” medicine to the cultural sensitivities of these populations. 

Overall, the synthesis not only provides important insights into the often negative experiences of people living with obesity, but also, as the authors point out,

“…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.”

Clearly, the call, “Nothing about us, without us”, needs to be more widely heeded in our approach to better understanding and addressing the obesity epidemic. 

Berlin, D