Gender matters in how men seek and receive help after a cancer diagnosis, says recent PhD graduate Lisa Wenger, Department of Family Relations and Human Development. She has been investigating how men diagnosed with cancer obtain the support they require to help them handle the challenges of their illness.
Research on men’s medical help-seeking behaviour has often been limited to the factors that influence whether or not men decide to go to the doctor when they think they have a medical problem. Wenger’s research focus, however, is on how men perceive and manage their health needs from the moment they are diagnosed through the course of a critical illness.
“Cancer can be a scary diagnosis and we know it can have a huge emotional impact as well as physical,” she says. “Some men still aren’t receiving the support they need; relative to women, not as many men use the cancer support systems that currently exist.”
Health professionals are interested in learning how to better engage male patients, says Wenger, who has worked in the public health sector and with a cancer research group.
“Cancer support services can’t be gender blind because what works for a group of women with cancer won’t necessarily work for a group of men with cancer. We need to better understand the ways in which gender scripts inform how men make sense of what’s happening to them and guide their determination of what are acceptable responses to the impacts of their illness.”
Although most men readily accept the need for medical assistance after a diagnosis, they might not consider joining cancer support groups. When it comes to their emotional needs during their illness, men can be left to wrestle silently with worries that they may become a burden to their family, Wenger says. “For those men who don’t attend formal support group meetings, who don’t have close friends with whom they can talk about the impacts of their illness, and who don’t want to lean too heavily on their family, living with cancer can be an extremely lonely experience.”
Wenger worked with Wellspring Cancer Support Network and HopeSpring Cancer Centre to recruit 30 men ranging in age from 30 to 80 who had some form of cancer.
In each interview, she invited the participants to discuss their needs, where they sought help, what kinds of support they used and what, from their own perspectives, was lacking in terms of accessing the support they needed throughout their experience with cancer.
Her findings show that a cancer diagnosis can come as a major shock and men frequently experience the destabilization of their self-image.
“Their first thought may be ‘I’m going to die,’ and their present and future assumptions about their bodies and their life as a whole may be called into question. Men are socialized to see value in a strong and active body, to find purpose and meaning in what they can do for their family and society. When disease erodes these capacities it can level a major blow to their sense of self-worth.”
The men who participated in Wenger’s study shared personal stories of how their illness could leave them feeling dependent, less vital, exposed, uncertain and isolated. For many, this disclosure was motivated by a desire to help others avoid the issues they had encountered.
“It’s amazing how candid they were,” she says. “And in the course of these conversations, consistent underlying patterns emerged. For example, many of the men immediately adopted an ‘I’m going to fix this now’ attitude, taking on the role of leader and shouldering responsibility for their illness. The image of a warrior, a pilot or a quarterback working with a team resonated with them.”
Wenger learned that as these men faced cancer, many quickly took action to care for their bodies through dietary changes and exercise, and to gather information about their cancer, exploring what impacts they might face in the future and how to handle them. They often solicited or accepted help from health providers, peers with cancer, family members and friends.
Wenger calls this “help seeking with a strong back,” a reference to a metaphor used by Joan Halifax, a Buddhist and anthropologist. The strong back, Wenger explains, provides a “foundation” or a sense of composure during times of disorientation.
The “strong back” approach involves holding onto a familiar way of living, maintaining a sense of normalcy by staying focused on their regular routines, continuing to contribute, whether at work or at home, and keeping some distance from difficult emotions. A man may shrug his anxiety off and tell himself, “It is what it is.”
Living with cancer is often referred to as a valiant battle, but this messaging often makes it difficult to deal with the “new normal” that cancer can create. In fact, even when the cancer has been treated successfully and the patient’s body has recovered, many people cannot return to the life they once knew. They have been altered by the experience, both physically and psychologically.
“Even though a man is declared cancer free, he might not feel the same as he did before his disease,” says Wenger. “The recovering male patient may have been forced to face his mortality. He may be dealing with the loss of certain physical functions, with exhaustion, and with ongoing physical or emotional pain. He might not be able to go back to work or do his usual chores around the home.
“All of this can oblige him to reconsider his definition of what makes a ‘good’ male partner, employee, father and friend. There can be a need to re-evaluate his life and adjust his sense of self in order to move forward. He is likely to need reinforcement from others, recognition that he is still valuable to them, but in order to gain such acceptance he will need to talk about these shifts with others.”
The “help seeking with a soft front” approach benefits this work, says Wenger, referencing Halifax’s description of “soft fronts” that allow people to engage with or be “touched” by personal vulnerability during difficult times.
“Evident among the men who opened up about their pain and struggles, ‘help seeking with a soft front’ involves asking others to hear their struggles, connecting with peers who share the experience of cancer, and seeking guidance from other cancer patients and therapists around the ‘big questions’ cancer can bring into one’s life, including how to rebuild a self altered by illness.
“For men socialized to be independent and emotionally reserved, this process can feel abnormal, uncomfortable and be perceived as a ‘feminine’ way of handling struggles,” says Wenger. This predicament is compounded when health professionals or loved ones expect the men to handle their struggles on their own, to be “tough,” “buck up” or simply “get better” after treatment has ended.
Both help seeking with a strong back and with a soft front are valuable, Wenger explains. There is value in working with others to resist the disruption of illness while also recognizing how some parts of the self have been altered by the experience. But while strong backs are more easily engaged by men, soft fronts are often less comfortable for men in western society.
In her postdoctoral work, Wenger aims to develop a team comprising men with cancer, support staff, medical practitioners and others to explore how her research on a combined “strong back” and “soft front” approach can be incorporated into intervention programs for men.
“We need to be more sensitive to how men are experiencing illness and how social pressures can facilitate and inhibit certain types of help seeking. I believe we can and must create supportive environments where men are enabled to engage both strong backs and soft fronts.”