Uncontrollable Cushing’s weight gain can shatter a woman’s body image
Resulting mental toll and low self-esteem highlight need for patient support
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Editor’s note: This story mentions suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com.
Living with Cushing’s syndrome can substantially alter how women view themselves and how they are viewed by society, a new study highlights.
The research reveals that the uncontrollable weight gain caused by the disease often subjects patients to harsh societal scrutiny, driving self-loathing, a loss of identity, and even suicidal thoughts. These findings underscore an urgent need for psychological support alongside medical care.
“The findings of the current research indicate that body image concerns are central to the experience of [Cushing’s], specifically related to experiences of a sociocultural objectifying gaze and self-objectification related to weight gain,” researchers wrote.
The study, “‘There was no way I wanted other people to see me’: Application and extension of objectification theory among women with Cushing’s Syndrome,” was published in the Journal of Health Psychology.
Understanding the Cushing’s experience
Cushing’s syndrome broadly refers to disorders driven by elevated levels of cortisol, commonly known as the body’s stress hormone. Cushing’s disease is a specific form of the syndrome where the underlying cause is a non-cancerous tumor in the brain’s pituitary gland. Cushing’s syndrome is significantly more common among women than men.
In Cushing’s disease and other forms of Cushing’s syndrome, high levels of cortisol can trigger symptoms that affect a person’s appearance, most notably uncontrolled weight gain.
In the 1990s, researchers coined the term objectification theory, a psychological framework in which women’s bodies are often viewed by society first and foremost as sexual objects. In this study, three scientists in Canada and the U.S. wanted to understand women’s experiences with Cushing’s through this psychological lens. The three researchers noted that they are all themselves women with firsthand experience dealing with body image issues, and one of the scientists is also a Cushing’s patient.
The researchers conducted in-depth interviews with seven women with Cushing’s syndrome. These women ranged in age from 23 to 68, and all self-identified as white, cisgender, and heterosexual. All of them had been diagnosed and received care in the Canadian healthcare system.
In the interviews, the women shared how Cushing’s symptoms could change how others treated them, especially with respect to weight gain that didn’t get better with off-the-shelf advice like diet and exercise. The women reported having to wade through snide comments, judgmental looks, and romantic rejection.
The psychological toll of the condition
“Society pushes in your face this is what the ideal woman should look like, and it was really hard because I didn’t look like that,” said one participant in her 60s. “And they also push in your face if you do these things you will look like this, or you’ll get close to looking like this and you’ll be rewarded and it’s like no I wasn’t rewarded.”
A 23-year-old participant in the study put it more bluntly: “People were way nicer to me when I was skinny and hot,” she said.
Unsurprisingly, these societal impacts affected the women’s day-to-day lives and how they saw themselves and their bodies. One participant said that Cushing’s-related weight gain “ruined me [and] broke my spirit.” Another described having a “huge amount of self-doubt and self-loathing” and that she was “beyond disappointed with myself, I’m embarrassed of myself.”
These mental health struggles could progress to the point that patients start to feel like they were losing their identity. One patient said she “got to the point where I didn’t recognize myself in the mirror.”
“One of the main killers of Cushing’s is suicide. And, uh, I see why,” another participant said. “I’m not gonna lie, I’ve been there and had those dark thoughts when the whole world seems against you and thinks that you’re crazy when I know I’m not. That’s the really, really, hard part too.”
Cushing’s people will always be literally and mentally scarred for life.
I am. I’m still working on repairing some of the self-esteem and the confidence … that was totally obliterated with Cushing’s.
Notably, the women in this study generally reported that getting diagnosed and starting effective treatment helped them psychologically — several of them reflected that learning their weight gain was due to a medical disorder was validating. And for women who received effective treatment, mental health generally improved once the syndrome was under control and patients were able to lose weight and manage other symptoms. One woman said that, after she lost Cushing’s-related weight, she was able to look in the mirror and tell herself, “you look like [yourself] again.”
But even though treatment can improve life quality, psychological scars from living with Cushing’s linger along with lasting physical changes.
“Cushing’s people will always be literally and mentally scarred for life. I am,” one woman said. “I’m still working on repairing some of the self-esteem and the confidence … that was totally obliterated with Cushing’s.”
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