Despite efforts to reframe obesity as a chronic disease, stigma persists. Advocates and experts push for a shift in narrative, focusing on quality of life rather than weight, but challenges remain.
A push to shift the long-standing narrative around obesity aims to reduce stigma, challenge negative stereotypes, and redefine how societies view the disease. Photo: © World Obesity
The all-too-familiar before-and-after pictures displayed in advertisements or shared on social media say it all. The close-up of a waistband that pinches, stretched to breaking point, alongside an image of a svelte, shrunken middle as a hand holds up the slack of loosened fabric celebrating the visual appeal of weight loss.
“Sadly, it’s all about the looks,” says Susie Birney, an advocate for the European Coalition for People Living with Obesity (ECPO) who is based in Dublin, Ireland, and has lived with obesity for most of her life. Referring to instances of considerable weight loss, she recounts well-meaning friends saying, ‘You look great!’ “But there’s such an obsession with body shape and size equalling your moral worth,” Birney says.
Together with researchers, patient advocates, and clinicians, Birney is working to shift the long-standing narrative around obesity, aiming to reduce stigma, challenge negative stereotypes, and redefine how societies view the disease.
Official endorsement of obesity as a disease
Globally, obesity is increasingly acknowledged as a chronic disease instead of a lifestyle issue caused by personal failure of willpower, a lack of self-control, and poor health literacy.
In 1997, the WHO officially recognised obesity as a chronic disease. The following year, the United States’ National Institutes of Health (NIH) stated that, ‘Obesity is a complex multifactorial chronic disease’. Various medical societies around the world then acknowledged a similar position.
A 2023 position statement from the World Obesity Federation (WOF) reflected the need to move away from a definition of obesity that centres on weight and body mass index (BMI). “We need to stop talking about obesity in terms of body size and body weight,” says Ximena Ramos Salas, chair of the WOF working group that formulated the position statement. She is also chair of Bias 180, a Canadian nonprofit that challenges the pervasiveness of implicit, explicit, and internalised negative beliefs and attitudes around obesity and other chronic diseases.
The WOF position statement rebuffs stigma but also makes explicit where the fault lies, noting that “common social narratives, language, and images used to discuss body weight, obesity, nutrition, and physical activity perpetuate weight stigma and contribute to negative health and social outcomes for individuals throughout the lifespan and across the body weight spectrum.”
The WOF concluded that obesity is a chronic disease characterised by excess adiposity—body fat—or dysfunctional adipose tissue that impairs a person’s health, and that “the clinical term ‘obesity’ should not be used to refer to a person's body size and should only be used when an individual has been appropriately medically diagnosed with obesity.”
Experts believe it is critical to fight against obesity stigma as a social phenomenon, not just fight against stigma associated with the name itself. Photo: © World Obesity
Internalising obesity stigma
Despite the updates to official definitions of obesity, a stubborn wedge of stigma continues to lurk, even among some clinicians, that prevents people living with obesity from seeking help and may further deepen feelings of self-loathing.
Ramos Salas says a central challenge is tackling ingrained stigma among people affected by obesity. “Disease states do not define who a person is,” she explains. “A person who has cancer does not usually define themselves as ‘cancerous’ or blame themselves for lacking the willpower and discipline to be ‘uncancerous’.”
“Many patients, due to their experiences trying to manage their obesity on their own, see themselves as ‘obese people’ who lack the self-control ‘to be thin’ or ‘to be a healthy weight’.”
“Many patients, due to their experiences trying to manage their obesity on their own, see themselves as ‘obese people’ who lack the self-control ‘to be thin’ or ‘to be a healthy weight’. Until we get over the internalisation of this weight bias in patients living with obesity, it’s going to be very difficult to address obesity.”
By seeing it as their responsibility, and not a healthcare issue, Ramos Salas says people living with obesity often hesitate to seek help from healthcare professionals because “they’ve been internalising all of these messages about obesity being a self-inflicted personal choice”.
She adds that the dominant narrative still focuses on weight being a behaviour or an aesthetic issue that can be controlled by eating more healthily and exercising more often. “This narrative that is very pervasive in our society and the language we use in public health to talk about obesity prevention and management has a huge role in this internalisation of obesity stigma,” Ramos Salas says.
Learning from HIV activism
Like obesity, HIV is a heavily stigmatised disease. In the early 1980s when the first cases of HIV were found among the LQBTQ+ community, the disease was labelled ‘GRID’ (gay-related immune deficiency), ‘gay plague’, and ‘gay syndrome’. As medical understanding of the disease evolved—in particular, the knowledge that HIV is transmitted via a virus and can affect anyone regardless of sexual orientation—and both activism and government support became stronger, a more accurate, inclusive, and less-stigmatised name was agreed: HIV and AIDS.
However, despite the new name, stigma around HIV continues to persist. The same may prove true for obesity, Birney believes. Some years ago, at a conference on obesity, she heard a speaker relate their journey with HIV, and she was initially confused about the connection to obesity.
“But hearing her talk, I thought, wow! It’s everything about us [people with obesity] because of the stigma, the feeling of shame when you tell people about it, the way society treats you, and the lack of access to the drugs when people need them,” Birney says.
Dr Vickie Lynn, chair of the Bachelor of Social Work Program and assistant professor of instruction at the University of South Florida in the US, has been living with HIV since 1985. She has spent the past few decades advocating for and empowering women living with HIV.
Of the role of language in propagating stigma in healthcare, Lynn says: “Sometimes we misuse terminology in social work or public health, and we may even disseminate stigma in a client’s clinical notes so when the next provider reads it, they already have the stereotypical image of what that person might look like, or be like, just based on those notes.”
Even though it’s been 40 years since the first reported case of HIV, Lynn still faces stigma as a patient. “It’s exhausting every time I go to a healthcare provider who does not use terminology that’s respectful, that labels and stereotypes people,” she says.
Recently, at a women’s health service when a doctor discovered her HIV status, “her eyes widened and her jaw dropped”, Lynn says. “Two days later I received an email saying the doctor no longer works for the clinic.”
With obesity notable for its visibility, stigmatisation can be rife just walking down the street, says Birney. “It’s a microaggression when they see you’re 25 stone (159kg). They look away and they look back, and then they look away because you’ve caught them looking. There’s this fascination. But the nose twitches and for the most part there’s a bit of disgust.”
Ford Hickson is an associate professor at the London School of Hygiene and Tropical Medicine in the UK with a special interest in HIV-related public health. He is not convinced that changing the name from GRID to AIDS made a substantial difference to HIV stigma. “It just shifted to the new name, which is the challenge with rebranding stigmatised conditions—the stigma is not in the name but in the social hierarchy and associations,” he says.
He cites the example of the Spastic Society changing its name to Scope, explaining that children switched to calling each other ‘scopers’ instead of ‘spazers’. But, Hickson says, “this does not mean renaming isn’t useful sometimes to keep ahead of the bigot’s curve”.
Change understanding of the disease first
Luca Busetto, both clinician and associate professor at the Center for the Study and the Integrated Treatment of the Obesity at University of Padova in Italy, also questions whether a new name would deliver much-needed change. “We need to fight against stigma as a social phenomenon—not just fight against [stigma associated with] the name.”
Plus, simply giving obesity a new name runs the risk that “all the work that we did over the last 20-30 years convincing people that obesity is a chronic disease might be lost,” Busetto says, recalling that in 2017 the American Association of Clinical Endocrinologists (AACE) and American College of Endocrinology (ACE) proposed a new diagnostic term, adiposity-based chronic disease (ABCD), that explicitly identified obesity as a chronic disease. “It explained the mechanism of disease well for academics but in the real world, nobody used it,” he says.
However, Busetto and his colleagues at the European Association for the Study of Obesity (EASO) believe that changing the diagnostic and management framework to better reflect the range of comorbidities associated with obesity is a good place to start to improve the lives of people with the disease.
Published in July in the journal Nature Medicine, a new framework proposes a move away from obesity diagnosis based solely on BMI cut-off values to measures that reflect the role of adipose tissue (fat) distribution and function in the severity of the disease.
EASO’s new framework reflects a surge in understanding of obesity in recent years and proposes using waist-to-height ratio of 0.5 and above as a cut-off for diagnosis of obesity.
EASO’s new framework reflects a surge in understanding of obesity in recent years and proposes using waist-to-height ratio of 0.5 and above as a cut-off for diagnosis of obesity, at which point medical intervention may be warranted.
“People who present with a high abdominal fat accumulation, regardless of their BMI level, have a higher risk of complications…To concentrate only on the problem of weight scale is a mistake,” asserts Busetto.
Jason Halford, professor of biological psychology and health behaviours at the University of Leeds in the UK and co-author of the new framework, advocates for retaining obesity as the name of the disease. “The patient community has accepted the name obesity, even with all the connotations it carries for them, and I don't think there's currently any other name that they identify with.”
Echoing Busetto, Halford believes that a name change may prove detrimental to research on obesity. “There's a fear that if we change the name at this stage, we might confuse the field when we're advocating for more money to put into research.”
But Halford says it’s possible that a new name for obesity might be adopted in time by younger generations. “The younger generation are perceived as ‘woke’ and less likely to accept being shamed. Perhaps they won’t accept this sort of terminology, and this way of treating people with obesity. Perhaps they will be the ones to drive change in terms of calling it something else.”
Whatever the future holds, what is critical to reducing obesity-related stigma is facilitating agency and empowerment for people with the disease. “We shouldn’t be doing [anything] without the involvement of people living with obesity,” Halford says. “We need to listen to those voices.”
Birney says she regained 38kg of the 82kg she lost after bariatric surgery. “I know 16 stone (101kg) is not usually considered a healthy weight, but for the first time in my adult life I am not either gaining stones or losing stones.
“I have been the same weight for three years. I am at my healthiest weight and I am the happiest person that I have ever been.”
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