Cancer & Stigma: Expert and Survivor Tips To Cope
Stock photo posed by model, sourced from Getty Images
A mental health expert and a cancer survivor share their insights on stigma in the cancer experience, including strategies to cope and move forward.
Stigma can sometimes feel like just one more thing on a huge list of stressors that make navigating cancer so difficult and overwhelming.
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.”
Coping With Mental Health Stigma
Stigma can prevent some people from talking about their cancer experiences and seeking the mental health support they need. Try to set aside any doubts you have about mental health treatment and give it a try. Talk with a counselor, therapist, or other mental health professional, and then decide if it could be helpful to you.
Connecting with other cancer patients and survivors who are going through similar experiences can also be an effective strategy. Grace joined a few cancer support groups, including one for young adults at her local Gilda’s Club. The group discussions helped her cope with the emotions of her cancer experience, including feelings of isolation and stigma. There was no pressure to share. Even just listening to others was useful.
“Some days I’d want to talk about it, and other days I’d think, ‘Let’s not talk about it at all,’” says Grace. “We are all unique. Even if I never came away with an answer, no matter what I said, it was so comforting knowing others were going through the same thing. I ended up making friends who also had breast cancer and having a text thread and being able to ask questions.”
Online discussion forums were another source of support for Grace. They provided a sense of camaraderie and community, and were accessible any time of day or night, including “when I’m lying in bed not able to sleep,” she says. “They were helpful, just in searching posts and finding people with tips that they tried.”
Navigating Stigma in Survivorship
A little over a year has passed since Grace’s diagnosis.
“Obviously, people are going to change through something like this that is so life-altering,” she says. “I’m starting the job hunt and people keep asking how it’s going. My headspace is not as clear as I’d hoped it would be right now. I’m just trying to give myself the time I need and not bite off more than I can chew.”
Grace explained that there’s a perceived expectation about cancer survivors that, once they are done with treatment, they are all better. “You are just going through the emotions of treatment and [then] you are kind of like, ‘Now what?’ The trauma of this whole last year I picture as this tidal wave coming and crashing down.”
The feelings of stigma she experienced going into her diagnosis are also resurfacing. “I feel like, now that I’m finishing active treatment, those initial feelings I had when I was diagnosed at the beginning are coming back again.”
She has concerns about how others may react, as well. As she starts her search for a new job, she isn’t sure how to have a conversation with prospective employers about her cancer experience.
“As much as I think people wouldn’t discriminate against that, it feels like I should keep it close to my chest,” says Grace. “I’m not sure how to navigate that as I start searching for a job. Do I bring it up?”
Grace also notes that this is a unique time to be starting a new job. If she starts work in the fall, “That’s the height of Breast Cancer Awareness Month,” she explains. On the one hand, it represents a fresh start. And yet, her cancer experience has been a major part of her life this past year. “So, I feel like I’m lying if I don’t share that,” she says.
If you’re navigating survivorship and worried about experiencing discrimination, rejection, or misjudgment, Dr. Knettel says, “My first tip is to start small: Ease back into work and social engagements. Start with environments that feel safe. Then use those early successes to build confidence and take bigger steps as you feel more comfortable.”
He also recommends connecting with other cancer survivors, such as through support groups or online forums. “Talking to others who have navigated these challenges can help to normalize your feelings and provide ideas for how to find your new normal.”
If you’re making the transition back to work, organizations like Cancer and Careers can also be helpful. Cancer and Careers provides tools and information, including tips on managing disclosure about cancer when looking for a job, to help cancer survivors thrive in the workplace.
If you have any cancer-related questions or concerns, whether about returning to work or something else, call our Helpline at 888-793-9355 to receive free, personalized navigation.
Cancer Survivorship Support
Our Cancer Transitions: Moving Beyond Treatment® program is a pre-packaged, manualized program designed to help cancer survivors move into the next phase of life after treatment, with skills & strategies to live fully. We also offer a Cancer Transitions program for young adult cancer survivors covering core issues for YAs, including physical, social, emotional & practical issues.
A Team Effort Provides Strength
Friends, loved ones, and communities can all play a part in addressing and reducing feelings of cancer-related stigma. Start by sharing cancer education and support resources with your community, such as this blog, to help improve understanding about cancer-related stigma and help patients, survivors, and caregivers find the support they may be seeking.
Healthcare providers can also play a role in reducing cancer-related stigma and helping patients manage feelings of stigma.
“The healthcare team can take a problem-solving approach, helping the patient to consider what parts of the stressors are within their control, and helping to set small, achievable goals to address them,” says Dr. Knettel. “In the area of stigma, when the healthcare team shows care and acceptance, and encourages the patient to connect with others who will support them, it can go a long way to helping our patients thrive, both during cancer treatment and into survivorship.”