Roundtable on Obesity Solutions 10th Anniversary: Looking Back, Moving Forward: Proceedings of a Symposium (2025)
Chapter: 3 Incorporating the Lived Experience
3
Incorporating the Lived Experience
“When we think about obesity, we too often think about it in terms of statistics,” said Joseph Nadglowski, Obesity Action Coalition. Every person in the statistics is a real person, he said, and we have to consider their experiences. In the media, people with obesity are depicted as the “headless masses,” said Nadglowski, and one of the most important things the roundtable has done is to start to listen to the voices of people who live with this condition. He introduced the panel of speakers and asked them to discuss how the roundtable came to the decision to prioritize these voices.
Theodore Kyle, The Obesity Society, described what the environment was like for people living with obesity when the roundtable began in 2014. He provided an example of how years before there was a negative response to Regina Benjamin when she was nominated to her position of Surgeon General. People said that she was a “bad example” for the public because she was “fat,” despite an impressive resume that included a career as a well-respected public health physician. Because of this pushback, Benjamin did not touch on the subject of obesity during her tenure. Kyle said that the roundtable invited people to speak about their lived experience with obesity, including their experiences with bias and stigma, and that these discussions shifted the thinking of many people on the roundtable. He commended the leadership and staff for embracing this perspective over the years.
Nikki Massie, Obesity Action Coalition, was one of the first people to speak at a roundtable meeting and she said it was intimidating to walk into a room filled with scientific expertise. The first few times she told her story, she was not sure if it was resonating with people, but as she has been
invited to more events, it has gotten easier and the interaction and engagement with the audience has increased. Nadglowski asked Massie if telling her story has gotten easier simply because she has done it more, or because society’s views have shifted. She responded that the world we are living in has become increasingly more interested in including people of size; for example, running magazines are featuring plus size runners on the cover. This is a sign, she said, that people are recognizing that people with obesity exist throughout society. This has given her more confidence in telling her story, because she sees her story as part of a bigger narrative that the world is interested to hear.
Nadglowski asked Massie if she has seen similar shifts in medical care over the past decade and she said unfortunately not. While there are exciting developments such as GLP-1 medications, there is still a lack of a standard of care for obesity. Massie said this became very clear to her when she was treated for cancer. In her cancer journey, the path of treatment was laid out and there were people keeping her on track at every milestone and decision point. In contrast, the responsibility for managing obesity is largely put on the individual, who has to put together their own medical team and keep themselves on track. Like cancer, obesity is a disease for which people need medical intervention, she said, but the medical system approaches these conditions very differently. One area where Massie said she has noticed progress is in the language around obesity. The new medications have led to the development of terms for phenomena that previously were difficult to talk about; for example, the phrase “food noise” now can be used to discuss the constant internal chatter about food that some people experience. Nadglowski added that there are researchers currently looking at “food noise” and trying to better define and measure the concept.
Kristen Sullivan, American Cancer Society, has a unique perspective as a public health nutrition professional and as a parent of a child with obesity, said Nadglowski. Sullivan said when she started working in public health, there was a lot of focus on individual behavior change—eat less, move more. When her daughter was born, she weighed ten and a half pounds, and she stayed on that high body weight trajectory from “chubby baby to chubby toddler to overweight preschooler.” The family was “doing everything right,” said Sullivan, eating meals at home and limiting sugary foods and screen time. In addition, her older son grew up in the same environment but had very different weight outcomes. Sullivan said this made her start thinking about what the public health community could be doing differently in communicating about obesity. When she joined the roundtable, she realized there were other people thinking the same things. She noted that she was even able to take the things she learned at the roundtable in her personal capacity and use it in her work at the American Cancer Society.
Nadglowski asked her to expand on what types of changes she has made at the American Cancer Society. Sullivan said that she and her colleagues have put together an obesity messaging work group that talks about the importance of healthy eating and physical activity for health benefits, rather than simply as a means to lose weight. The American Cancer Society messaging talks about obesity and body weight as risk factors for cancer but acknowledges the complexity of obesity management and treatment. Sullivan noted that she has seen similar changes in messaging from federal agencies such as the Centers for Disease Control and Prevention and the National Institutes of Health as well. Progress has been made, she said, but there is more work to be done. Kyle said this slow change can be attributed to the way innovations are adopted. Early adopters have been pushing new messages about obesity, while the majority of the population still thinks that people who have obesity have done something wrong. While slow, the tide is turning.
As an example of this change, he said that in the early 2010s, a paper in Pediatrics suggested that children with severe obesity should be removed from the care of their parents for medical neglect. This argument “just would not fly today.” Nadglowski asked if there has been a shift in the environment away from intentional cruelty directed at individuals with obesity and toward unintentional bias. Kyle agreed with this assessment, citing evidence from Harvard’s Project Implicit. Between 2007 and 2020, both explicit and implicit bias went down for characteristics such as race. Explicit bias on weight went down, but implicit bias went up and remained high. Kyle characterized this finding as “it is no longer cool to explicitly shame people,” but implicit bias is everywhere.
On the topic of messaging, Nadglowski asked Sullivan to talk about what messages are important for parents of children with obesity to hear. First, she said, “You know your child better than anyone.” She encouraged parents to follow their instincts and do what is best for their child, regardless of what the media, health professionals, or well-meaning family and friends might be saying. Second, parents should find a pediatrician who can be a partner in their child’s health rather than pushing them in a certain direction. Finally, said Sullivan, parents need to let go of the guilt. Parents of children with obesity often feel as if they have done something wrong. Not only is this not true, she said, it is “certainly not helpful” for their child.
Massie agreed with Sullivan’s suggestions and said that feeling guilty can keep parents from being totally forthcoming with medical professionals. Further, parents need to remember that while having obesity has risks, it does not mean the child is not going to be active and have a full life. Most importantly, obesity is “not a measure of the character of who they are as a person.” Sullivan agreed and added that her daughter is very happy and
active, plays sports, has lots of friends, and is “living her best life.” Obesity is just one aspect of her physical being that needs to be managed.
In closing, Nadglowski said one way the roundtable has been changed by the incorporation of lived experience is its adoption of person-first language. Kyle said that language can reveal the way that someone thinks. If a person describes someone as “being obese,” they are implicitly saying that is who they are. In contrast, if a person uses person-first language to describe someone as “an individual with obesity,” it conveys the idea that obesity is a condition that is separate from identity. Kyle noted that the Associated Press Stylebook recently advised writers to not write about “obese people” but to instead write about “obesity.” This shift is also happening in the scientific literature, he said, but it is not yet universal.
