Worse Off Alone

CUREFall 2013
Volume 12
Issue 3

Emotional isolation during cancer can negatively impact healing.

In what is now considered controversial research, scientists in the 1950s demonstrated that, among other things, infant monkeys separated from their mothers would fail to thrive. The scientists were on to something both groundbreaking and heartbreaking: The absence of emotional support can jeopardize our physical well-being. Interest and investment in this area of social research has continued in recent years, including taking a closer look at how emotional isolation affects people living with cancer and other serious illnesses. Conclusions vary, but it’s clear that loneliness is not beneficial.

When Tisha Wallace received a diagnosis of stage 1 uterine cancer four years ago, she was 41, working at a university, and living alone in Asheboro, N.C. Family members living nearby drove her to appointments. Her mother and father kept up her spirits by planning activities they could do together post-treatment. A niece moved in to help for one of the three months Wallace was laid up. Work colleagues and even people she hadn’t heard from in years sent messages or cards letting her know that “everything will be OK,” she recalls. Others stopped by to talk or listen, or just to sit with her. There was no formal organization of support. “They just knew I needed it,” she says.

When she was alone with her thoughts, she often meditated on biblical passages, but it wasn’t always easy to stay positive. In her lowest moments, she called her mother or a close friend. “Emotionally, you’re all over the place,” Wallace recalls about her cancer experience. “It helps when you’re by yourself to know that you’re really not by yourself.”

It helps when you’re by yourself to know that you’re really not by yourself.

As she describes it, Wallace’s support network would anchor the healthy end on the loneliness scale, in social and emotional terms. Social scientists distinguish between the two in order to better study them, typically defining instrumental social support as having reliable caregivers to drive patients to appointments or prepare healthy meals, for example. Social-emotional support means having others available with whom one is able to discuss meaningful issues, or just vent.

There is no direct link between severity or recurrence of cancer and social support, but a study published in 2006 showed that among 2,835 women who had received a breast cancer diagnosis, those who were “socially isolated” had an increased risk of dying compared with those who were “socially integrated.” In this way, a social network plays an important role. Still, patients can be surrounded by helpful people, but if they can’t talk to them about meaningful issues, “that load becomes heavy over time,” says Lori Wiener, head of the Pediatric Psychosocial Support and Research Program at the National Cancer Institute’s Pediatric Oncology Branch. “It’s the quality and honesty of communication that matters most to those living with serious illness.”

Ideally, all patients should have a network that supports them through the trajectory of illness and recovery. It’s not unusual for individuals facing life-threatening illnesses to reprioritize activities and re-evaluate friendships. But isolation can arise if patients withdraw or suppress their feelings to spare burdening loved ones. Wiener says when that happens, a support group can be very helpful. Having personal experiences validated by someone who has lived through similar experiences can make patients feel less alone, she says. It’s also important for patients to stay connected to the world outside of cancer so that they can “transition back in when it’s over,” she says.

To protect patients with a tendency to isolate, a thorough health assessment should include questions about coping skills, Wiener says. Prior resilience and ability to reach out for support when needed are some of the best indicators of how patients will handle the stress of serious illness. If their healthcare providers fail to inquire about their emotional, social and spiritual needs, patients can ask to speak with an oncology social worker or psychologist to help obtain the whole-person support they need, she adds.

Researchers in Australia wanted to learn whether emotional connections influenced the length of survival for 163 men and women with advanced cancer. They concluded that there is no linear relationship between the number of confidants and length of life for seriously ill patients, and it didn’t matter whether the confidants were friends, family members or doctors. By contrast, a U.S. study examined the link between social support and quality (rather than quantity) of life. For more than 3,000 patients with breast cancer, researchers found that “having more close friends and relatives, in particular, was related to higher [quality of life].” The social networks the researchers considered included a spouse or intimate partner, close friends and relatives, religious and social ties, as well as volunteering.

[Women with advanced breast cancer support each other]

Age and gender can also present challenges. For example, teenagers with cancer who use peers to help them navigate through adolescence may become isolated from friends because of physical changes or time away from school. Respites and camps allow them to socialize and share activities with other teens who understand the cancer experience.

Though men traditionally maintain smaller social networks than women, a Swedish survey affirmed that the depth of men’s relationships with those networks affects their well-being. A group of 431 prostate cancer patients, ages 50 to 80, were asked about the extent to which they shared emotionally taxing feelings. Men with no one to confide in were less content with their lives. About one in five had no one to confide in; approximately three in 10 who lived with a partner could not confide in their partner; and among men without a partner, about 70 percent could not share emotional feelings with anyone. The authors noted the impact of emotional isolation on the well-being of middle aged and older men is rarely studied and that “a special effort may be needed […]to offer those who need emotional support some alternative.”

Fortunately, research is aiming to identify and deliver the types of support to help improve quality of life for each individual. This is what personalized medicine means to patients, says Rebecca Kirch, the American Cancer Society’s director of quality of life and survivorship. Scientists have had some success extending quantity of life, and now they’re recognizing that emotional care is also part of “whole-patient care.”

“It’s a matter of getting all professionals to stretch their healing muscles so that what’s important to patients and families is at the center of the treatment plan,” Kirch says.