The Shadow of Shame

TODD LANDABURU REMAINS ON THE MOVE, juggling his work as a digital growth marketing manager with his sustained commitment to working out at least an hour each day—whether lifting weights, walking or hitting the soccer field. He’s maintained that exercise streak for more than two years and counting. “I feel 98% back to where I was physically,” he says.

Diagnosed with stage IV oral squamous cell carcinoma in 2022, the then-48-year-old endured a 10-hour surgery to remove the cancer, which was located on the floor of his mouth and had spread to the base of his tongue. Surgeons removed 32 lymph nodes and half of his tongue, rebuilding it with a nerve-rich piece of tissue from one wrist. Radiation and chemotherapy followed. Landaburu, who was unable to eat, relied on a feeding tube for nine months. The radiation’s effects were visible in other ways too, with burns on his neck for roughly six weeks.

Landaburu acknowledges there is no way to know why the cancer developed, but he blamed himself due to his drinking habit, which he stopped nearly a year before his diagnosis. Above all, he hated being viewed as ill, a cancer patient before his 50th birthday.

“Still pretty young having to face a stage IV diagnosis,” the Reno, Nevada, resident says. “Embarrassment and shame, guilt. ‘I did this to myself. Who do I have to blame?’”

Todd Landaburu Photo courtesy of Todd Landaburu

Researchers who study health-related shame describe it as the experience of feeling judged, or harboring the fear of being judged, as inadequate, unworthy, flawed or damaged due to a medical condition or related circumstances. Cancer patients may feel shame while fielding questions from clinicians, family members or even the woman standing behind them in the grocery line. Shaming can be inadvertent as people try to process and explain to themselves how bad things happen to good people, says Alyssa Burgart, a physician and bioethicist at Stanford University School of Medicine in California.

“And I don’t think many folks even realize that’s what they’re doing,” she says. “Even the follow-up question of, ‘Oh, well, did you wear sunscreen when you were a collegiate swimmer?’”

Survivors who feel shame related to their diagnosis, whether they have an “embarrassing” type of cancer or feel they caused their disease, are more likely to retreat and conceal their illness, researchers say. Shame also can undercut medical care, such as when patients withhold relevant health details from their doctors, according to a review article published March 18, 2024, in the International Journal of Mental Health Nursing.

Moreover, cancer treatment can involve an unfamiliar and intrusive level of bodily scrutiny that may heighten a person’s sense of vulnerability. In one study, breast cancer survivors described the body shame they felt during treatment, including being left alone and topless in examining rooms. One survivor recounted how the radiation team marked her breast with a felt tip pen and didn’t wipe off the ink afterward. “I felt like a piece of meat,” she said.

“Even cancer that isn’t linked to lifestyle can carry shame with it,” says Will Bynum, a family medicine physician at Duke University School of Medicine in Durham, North Carolina, who studies shame in health care. “There’s a sense of dependency that cancer brings with it and a sense of vulnerability that cancer brings with it. … Shame can develop attached to that, where you think, ‘There’s something innately wrong with me now.’”

Unraveling the Underpinnings

Burgart has written about “healthism,” which she describes as elevating the pursuit of individual health to a moral duty and a good that is “always within your control, entirely attainable,” as she wrote in her blog. That can translate into the belief that if people eat a healthy diet, rigorously exercise and check all the other lifestyle boxes, they will build some type of immunity shield around their personal health. The focus on individual responsibility for good health and the shaming of people perceived as not meeting the standard flared up during the COVID-19 pandemic, she notes. “Definitely I saw it in many communities. ‘Were you wearing a mask? Were you perfectly wearing a mask? Did you perfectly do testing?’” Burgart says.

There are “lame ideas” tied to a cancer diagnosis, such as stomach cancer being caused by an individual suppressing their emotions, says Luna Dolezal, a professor of philosophy and medical humanities at the University of Exeter in England and principal investigator of the Shame and Medicine project, which is studying shame in patient care, professional practice and medical education in the U.K. and Ireland. “That somehow it’s their own fault that their body has turned on them,” she says.

Clearly there’s a connection between unhealthy habits and increased cancer risk. Federal officials recently turned the spotlight on alcohol, releasing a report linking consumption to a higher risk of at least seven types of cancer. And smoking remains a notable risk factor for more than just lung cancer; quitting reduces the risk of developing nearly a dozen other cancer types. But factors other than individual behaviors, such as genetic predisposition to the disease, exposure to toxins in the air or water, and lack of regular medical care due to being uninsured or underinsured, also can influence the emergence of cancer, Burgart says.

At its root, shaming others may reflect a healthy person’s own fears about one day becoming sick or needy, Dolezal says. “It’s kind of an impulse to not be the vulnerable one by putting the vulnerability out there on someone else.”

Shame can buffet cancer patients and survivors in many ways, Dolezal says. A diagnosis may involve body parts considered embarrassing or taboo because they’re linked to bowel function or sexuality, such as penile cancer. Treatment experiences may also spur feelings of shame: losing one’s hair, breasts or other body parts; being unclothed and scrutinized by health care professionals; and the inherent power imbalance between patients and the clinicians they rely on for their treatment.

“You don’t want to alienate them because they’re going to be the ones administering your next chemo,” Dolezal says of health care providers.

With some cancers, such as those diagnosed in the mouth or throat, the effects of surgery, radiation and other treatment may be visible for years afterward, says Amanda Hollinger, executive director of the Head and Neck Cancer Alliance, an educational and advocacy organization. When there are eating difficulties, such as only being able to swallow soft food, it can be awkward. “It makes some people just not want to go eat out, which is how you socialize with people and how you interact, so it can be isolating,” she says.

Landaburu, whose most recent scan in December 2023 showed no sign of cancer, says he feels better now than perhaps at any time in his life. He’s regained the 40-plus pounds he lost while using a feeding tube and has built back muscle. He’s also learned to live with changes in his ability to eat and speak brought about by his treatments for mouth cancer.

He eats very slowly. Swallowing is more difficult than before his diagnosis and treatment. Sometimes he covers his mouth to prevent food from falling out. He continues to work with a speech pathologist to learn how to speak again with his reconstructed tongue, but he says it’s still difficult to form certain sounds like hard c’s or g’s, particularly if he’s tired.

“I can enunciate reasonably well,” Landaburu says. “But if I do have to speak in loud rooms or if I get excited and start talking too fast … I get a little bit unintelligible. And that brings me a lot of frustration.”

Shame’s Ripple Effects

Research has shown that shame can impact medical care. People may delay screening or seeking medical help for an unusual symptom or change in their bodies, according to a 2022 study published in the Journal of Evaluation in Clinical Practice that explored shame and patient care. Shame plays a big role in avoiding lung cancer screening, Bynum points out. “Not just the fear of having cancer, but the fear of the judgment that comes with it,” he says.

When Bynum discusses lung screening with his patients, “I try to stay a step ahead of them, of their shame, and just say, ‘Hey, this is an important test, and it can ultimately help add years to your life. It’s not about smoking—it’s just about trying to keep you healthy.’”

Advocacy efforts have helped to reduce some of the stigma and shame, such as for breast cancer, which used to be “hugely stigmatized,” Dolezal says.

But some attitudes have been slower to shift and, in fact, are headed in the wrong direction, says Timothy Williamson, a clinical health psychologist at Loyola Marymount University in Los Angeles who is studying the effectiveness of a self-compassion approach tailored to the needs of people with lung cancer. He cites one study showing a dispiriting shift in attitude toward lung cancer patients across a decade. In 2018, 52% of patients reported that strangers or acquaintances “have done things that I felt were blaming me for my lung cancer,” a higher percentage than the 31% who responded similarly in 2008.

As many as 1 in 5 people with lung cancer have never smoked, but they may still endure blaming questions, Williamson says. Some adopt a preemptive strategy, as Williamson describes it, by volunteering, “‘Oh, and by the way, I never smoked.’ In some ways, they’re put in a position where they feel the need to do that because of the stigma,” he says. “So, the stigma still is affecting them.”

When Terri Ann DiJulio first got involved in lung cancer fundraising and advocacy, she avoided talking about her own tobacco history. Instead, she would share stories about other family members, including her mother, who died from lung cancer despite never smoking.

For nearly two decades, DiJulio—now a three-time survivor of the disease—continued that approach, until one day in 2023 when she took the microphone at a cancer advocacy conference and shared that she had smoked cigarettes earlier in her life. A worrisome lung nodule, later diagnosed as cancer, had been initially identified serendipitously in her early 40s when she developed pressure in her chest that her physician wanted checked out for heart-related issues. (Her heart was fine.) Despite her smoking history, DiJulio didn’t “deserve cancer,” she told the group with tears rolling down her face.

The disclosure was completely unplanned, the 64-year-old suburban Philadelphia resident says. But until she went public, she says, she didn’t recognize that she was carrying shame internally about her tobacco use. “I’m finally talking about my whole story. And that story does include a 15-year-old girl who picked up her first cigarette.”

Easing Shame

Asking individuals with cancer to defend themselves against shaming feels inherently unfair, Burgart says. But there are steps they can take if they choose to engage, she says. One approach: Turn the attention back on the speaker, providing them with an opportunity to clarify. For example, Burgart suggests responding, “What did you mean by that?” or “I must not have heard you right. It sounded like you might be blaming me for my diagnosis.”

In situations where a clinician’s language feels shame-infused, a patient can raise questions about what was said or any implications regarding what was conveyed, Dolezal says. If that feels too uncomfortable for the patient, an alternative is to write a letter or email or ask a friend or family member to speak on your behalf, she says.

Joining a wider cancer-related community either locally or online also can combat internalized shame by enabling the person to share their experiences with others and find support, Dolezal says. “That’s the thing about shame—it makes you feel alone and isolated.”

In the early days, Landaburu focused on his job to distract himself from the stress and emotions swirling around his diagnosis and intense treatment. He took work-related calls from his hospital bed and brought his laptop to chemotherapy. Later, Landaburu began to support other cancer patients and survivors, and today he speaks with people newly diagnosed with cancer as an ambassador for the Head and Neck Cancer Alliance.

For her part, Hollinger of the Head and Neck Cancer Alliance highlights the work that survivors like Landaburu are doing to educate others about their malignancy, reducing shame and stigma. “I see that the patients that we work with that are giving back, that are helping to mentor others and that are using their voices, they are just so inspiring to me.”

Living with cancer and the rigors of treatment is a challenging road to travel, physically and mentally, for patients and their loved ones, says Burgart. Shame only adds to the burden.

“I think the idea that individuals themselves are solely and primarily responsible for their illnesses is a form of gaslighting. It’s very hurtful,” she says. “Cancer patients certainly don’t deserve more stress for what they’re facing.”

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