Supporting Each Other: Peer Support Throughout Your Journey
Published in the Winter 2013-2014 issue of LBBC's Newsletter, Insight
Teresa Li of Chicago was shocked to learn she had stage III breast cancer. A 39-year-old mother of two children who were younger than 8 at the time of her diagnosis, she felt troubled by the treatment decisions she had to make, the uncertainty of her future and how to tell her children about her diagnosis.
“It all seemed so overwhelming, and I knew I couldn’t handle it all by myself,” Teresa, now 41, remembers.
Then she discovered a breast cancer hotline. Speaking with a volunteer with a similar diagnosis eased her worries. From there, she became involved in a monthly in-person support group for women with cancer and, soon after, discovered the extensive network of online and social media resources available to her for peer support. The more peer emotional support she received, the better Teresa felt.
What Is Peer Emotional Support?
According to Peers for Progress, a program of the American Academy of Family Physicians Foundation, peer emotional support is when “people with a common illness are able to share knowledge and experiences — including some that many health workers do not have.”
This type of support can take the form of phone calls, electronic messaging through online chat rooms or forums, one-on-one or group in-person meetings and through social media sites including Facebook.
David Spiegel, MD, director of the Center on Stress and Health and professor of psychiatry and behavioral sciences at Stanford University, says this type of support is important because people are social creatures and a cancer journey can be isolating, especially if you feel you are burdening family and friends with your worries.
“Part of what is helpful with peer emotional support and counseling is that you feel less alone with your disease,” Dr. Spiegel says. “It helps you learn to treat your emotions as friends rather than enemies, and that your feelings are not something to be suppressed for your family and friends. Furthermore, you learn that you can give as well as receive advice and support — your cancer experience can become an asset, not just a problem.”
At times, Doreen Bailey, 50, of Clarkson, Mich., withheld her feelings not just to protect her loved ones, but also because she did not think they could relate to what she was experiencing.
“My family and friends were very supportive, but it’s difficult for someone who hasn’t gone through a breast cancer diagnosis to completely understand what you’re feeling,” Doreen says.
Peer support differs not only from the kind of support that loved ones can offer, but also from the type of support healthcare providers can extend. Rosa Canosa, MSW, MPA, LCSW-R, program division director of CancerCare, oversees online, telephone and group peer support programs and says that although healthcare providers can certainly be compassionate and warm with those affected by breast cancer, the empathy and bond between peers who share a similar diagnosis is very powerful.
“A peer, for example can feel freer to refer to specific providers whereas a medical professional may be more inhibited to do so,” Ms. Canosa says. “The bond among peers provides a safe place for someone newly diagnosed to communicate and grapple with gritty issues.”
This desire to connect with other women affected by breast cancer is precisely what led Ronda Walker Weaver, 54, of Orem, Utah, to actively seek support from peers even though she was already blessed with the support of family and friends.
“I was looking for someone who could speak the language of breast cancer and mentor me,” Ronda says. “I think everyone who goes through breast cancer treatment can benefit from having a ‘breast cancer sponsor.’”
Obtaining Peer Support
Peer emotional support is commonly associated with telephone helplines and with one-on-one or group meetings that take place face to face.
When Ronda was about to undergo treatment, she reached out to a support group offered by her local chapter of the American Cancer Society. In addition to providing her an outlet for her emotions, this support group offered themed meetings and workshops, one of which taught women who experienced hair loss from chemotherapy how to wear wigs or hats. Another support group Ronda attended allowed women to learn and practice mindfulness meditation and yoga together.
Ronda also credits peers she met in the hospital setting with offering her support.
“My best support came from the chemotherapy room. The other women and I were able to share tips and discuss so much,” Ronda says. “We gave each other a tremendous amount of support.”
Susan Seymour, 44 of Hopewell, N.J., found solace in the peer support she received from discussions over the telephone. She spoke with peers by accessing a few organizations’ phone support services, including LBBC’s Breast Cancer Helpline, for the first 6 months after she was diagnosed with stage II breast cancer in November 2012. Additional screening in May of 2013 determined the cancer had become metastatic.
“A lot of times you feel very lonely, like a dark cloud is following you around,” Susan says. “I didn’t really know anybody that had breast cancer, so it was important for me to be able to talk to anyone who would listen.”
Of course, in today’s technology-driven world, peer emotional support encompasses more than just in-person support groups and telephone helplines for those diagnosed with breast cancer.
According to a recent study published in Patient Education and Counseling, 31.5 percent of women affected by breast cancer used an online breast cancer community at some point in time, and about 17.8 percent used social media, specifically Facebook, to connect with peers also facing the disease.
Seeking support via the Internet and social media was especially important to Doreen, who lived in a rural area with no local in-person support group for women with breast cancer.
“The closest support group for me was about an hour away,” Doreen says. “I don’t think I could’ve gotten through my experience without online support.”
Ms. Canosa thinks the prevalence of breast cancer in the United States and the limited resources in areas such as Doreen’s means social media and the Internet will continue to flourish as avenues for accessing peer support and information.
“A good peer support program that provides training and oversight to its members can be a very effective tool to help people connect to each other and reduce that sense of isolation,” Ms. Canosa says.
Support gained from interacting with women through social media sites complemented in-person or face-to-face support for both Ronda and Teresa.
“I needed online support when I was not healthy enough to have face-to-face support,” Ronda says about obtaining support through Facebook during her chemotherapy treatment.
Blogging also gave Ronda an outlet to express herself and receive support. Teresa started a private blog on CaringBridge for her close family and friends to follow her journey.
“People were cheering me on,” Teresa says. “It felt great to get that kind of support.”
The Benefits of Talking With Someone Like You
Many women with breast cancer enjoy the camaraderie that comes from giving and receiving peer emotional support — including the opportunity to serve as cheerleaders for one another and to discuss issues that loved ones and healthcare providers may not be able to relate to.
For Doreen, the benefit of talking with someone facing similar health challenges was also the wealth of knowledge she received about treatment decisions, follow-up care and overall practical tips.
Doreen discovered her online group, “Knitters for Breast Cancer,” through ravelry.com, a website and online community for people who enjoy knitting and crocheting. In addition to talking about knitting, the women in the breast cancer subgroup start threads when they have questions or concerns and wait for responses.
“Since there are members across the globe, there is always someone up at every hour of the day to respond to a question or concern,” Doreen says, “For me, it was like someone was always there to hold my hand, even though they weren’t physically there with me.”
Teresa feels the same way about her in-person, phone and social media connections. A weekly ritual she enjoys is the popular Twitter chat hashtag, #BCSM, which stands for “Breast Cancer Social Media.”
Started in 2011, BCSM has a popular weekly following on Monday evenings. During the hour-long Twitter chat, users — and sometimes medical professionals — interact with one another to discuss the latest breast cancer information and to swap personal stories.Teresa observes the #BCSM chat exchanges, but she sometimes shares her stories or asks questions of her fellow breast cancer tweeters.
Teresa observes the #BCSM chat exchanges, but she sometimes shares her stories or asks questions of her fellow breast cancer tweeters.
“I got to ask about reconstruction, which was such a big decision for me,” Teresa says. “Just chatting with others who had been through it was extremely helpful.”
Though she has experienced success engaging with others through Twitter, Teresa acknowledges that it is not always the easiest tool to use to communicate, especially with the 142-character limit.
Dr. Spiegel says that though it may be popular, social media and online peer communities may not be ideal for people who are not comfortable putting their life out there in cyberspace. He adds that without facilitation of some kind, social media could sometimes lead to misleading information being shared.
“I think this kind of platform has great potential for connecting people, but also the potential for trouble,” Dr. Spiegel says.
That said, peer support acquired offline is not immune to challenges. Sometimes, you might get advice and opinions from peers that do not sit well with you.
While in a hospital waiting room, Doreen heard perspectives from people that she wishes she had not.
“If people have a negative attitude and I don’t want to deal with it, I tell them they’re allowed their opinion, but that I don’t feel that way,” Doreen says. “I then don’t discuss it with them any further.”
Susan says she has heard everything. She once openly expressed a craving for a cupcake, and another woman advised her against it because she claimed it would worsen the cancer.
“When you put yourself out there, people feel free to comment,” Susan says. “I try to ignore these comments when they aren’t helpful, and instead focus on living my life.”
Despite some challenges that might arise, peer emotional support in all its forms is important to Ronda because of the potential such bonding has to improve the life of someone who is newly diagnosed.
Ronda encountered this first-hand, but the first time it happened was the day after her diagnosis. She went to the gym and began talking with a woman she had not seen before. During their conversation, Ronda learned the woman was 9 months from her own breast cancer diagnosis.
The coincidence moved Ronda, and the two became friends. The woman listened to Ronda’s concerns, shared information and stories of her own, and even gave Ronda hats in case she experienced hair loss from chemotherapy. The woman was her role model and guide, and it inspired Ronda to want to be that peer for another newly diagnosed woman.
Ronda is now a Helpline volunteer for LBBC.
“It’s something I must do,” Ronda says. “When I can support someone the way the survivors I have met supported me, it’s a good feeling.”
If you need emotional support, LBBC is here to help. In addition to our resources available on lbbc.org, you may find practical information from the updated edition of our Guide to Understanding Your Emotions. Go to lbbc.org/guides to download or order a copy.
Do you want to talk with someone who cares and knows what you’re feeling? Our Breast Cancer Helpline can connect you with a peer for support today or when you’re ready. Call (888) 753-LBBC (5222) — we can help.