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Cancer & Stigma: Expert and Survivor Tips To Cope

No one should ever be judged or blamed for their cancer diagnosis. And no one should ever feel responsible for developing cancer. Yet, some people worry that others will have negative perceptions or reactions about their diagnosis. Some people may feel an internal sense of guilt or shame, believing they somehow caused their cancer.  

“The most common misconception that contributes to stigma is that a person with cancer was somehow responsible for their illness,” notes licensed psychologist, scholar, and educator Brandon Knettel, Ph.D. 

“Stigma can also come from the perception that a person with cancer is a burden,” he adds. “Most people with cancer get a lot of support from their loved ones and their community, but sadly that’s not always the case.”

 

What Is Stigma?

Stigma happens when a group of people or a society has negative beliefs or feelings about something, such as a circumstance or a condition. Experiencing any kind of stigma can be upsetting and isolating.  

 

Dr. Knettel specializes in mental health intervention development and capacity building. As the Associate Director of the Duke Center for Global Mental Health, his international projects include improving the understanding of cancer-related stigma.

“Stigma generally affects people in two ways,” he explains. “There’s the direct emotional impact of feeling judged, mistreated, or discriminated against, which can lead to mental health challenges like depression or anxiety. And then there’s the indirect impact of stigma, preventing someone from seeking support or treatment.”

For people living with cancer, stigma can make an already distressing situation even more stressful. As Dr. Knettel notes, “Stigma can sometimes feel like just one more thing on a huge list of stressors that make navigating cancer so difficult and overwhelming.” 

 

Grace’s Story

Grace had known for a few years that she had the BRCA gene, an inherited mutation that increases the risk of developing breast cancer. As a preventive measure, she had been getting regular MRI screenings. But it was the discovery of a lump, and subsequent testing, that ultimately led to her breast cancer diagnosis.  

At the time she received the news, Grace was 30. One stigma she says she had “going into it” was the feeling that she somehow caused her cancer. Up until her diagnosis, she had been working in the nutrition field as a dietitian, and she remembers being unsure how to tell her clients about her diagnosis. Grace describes that feeling of stigma as “more internalized,” but adds, “There is a societal stigma about cancer.”

“Nobody does anything to cause their cancer,” she notes. “I worked through it with my therapist.”

As she navigated months of treatment and surgeries, Grace also noticed that some friends and family hesitated to reach out to her. Incorrect assumptions seemed to keep them from doing so, even just to check in. While it wasn’t necessarily a stigma, she says, “I feel a lot of people didn’t know how to talk to me. They’d say, ‘I don’t want to bother you.’”

“I know that everyone responds to things differently,” reflects Grace, “but anyone who reached out to me, it made such a difference in my day. When I would see some people, they’d say, 'Oh, I’ve been thinking about you,’ but I never heard from them otherwise. They just assumed I didn’t want to be bothered. Simply checking in was appreciated — it doesn’t always have to be about my cancer. I could tell them whether or not I want to talk about it.”

 

Coping With Stigma After a Diagnosis

When facing stigma in your cancer experience, one strategy to help you cope is to talk through it with a professional counselor or therapist, as Grace did.  

It can also be helpful to remember that having fears of experiencing potential stigma is not a surefire predictor of how people will respond or react. If some friends or loved ones refrain from reaching out, it might be because they simply are not sure how to.

“From my experience as a provider, people with cancer are sometimes worried about stigma, and then are pleasantly surprised by how kindly and positively people in their lives respond to learning they have cancer,” shares Dr. Knettel.

But what if you do face negativity from others about your cancer diagnosis?

Dr. Knettel’s advice is this: “If you tell someone and they respond negatively, that doesn’t mean everyone will respond that way. Over time, you will find a network of people who will support you. And I encourage everyone who is going through a life-changing cancer diagnosis to consider seeing a counselor to support them along the way.”