If you’re coping with a devastating or chronic illness, you may find that joining a support group can be a helpful way of working through the various emotions you’ll experience over the course of your journey, giving you access, as Breastcancer.org notes, to “groups of people in similar life situations who meet on a regular basis to share their concerns. A support group is a safe place to exchange ideas about how to handle difficult issues.” Some support groups meet in person and are community- or hospital-based, while many others meet online via websites, chat rooms or social media platforms.
Disease-specific support groups have been around a long time and can be helpful for connecting you with other patients dealing with the same or similar issues and side effects. Finding other people who can relate to your present situation can be helpful for maintaining a more positive frame of mind when coping with a cancer diagnosis and treatment.
Whether joining a support group can actually lengthen your life, however, is not clear. A landmark 1989 Stanford University study in the journal The Lancet found that patients with metastatic breast cancer who participated in a support group lived longer than patients who did not. But several more recent studies have not found these sorts of survival benefits from support groups. Nevertheless, many hospitals, doctors and social workers continue to recommend them. Support groups may be especially helpful for patients who don’t have as much support from friends and family as they would like.
Annie Trance, a licensed independent clinical social worker and program manager of the psychosocial oncology department at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, says support groups “can be really helpful for people who are having difficulty processing [their experiences] and connecting with immediate family. A lot of people don’t want to burden [their families] further, and they withhold a lot of their internal struggles, so a support group can be a really good outlet.”
But Trance says if baring your soul and your fears to a roomful of strangers feels too scary, that’s OK, too. “I definitely think support groups are helpful, especially with addiction, depression and chronic illness, but I don’t think they’re for everybody,” she says. As with so many other aspects of each patient’s breast cancer journey, the decision of whether to join a support group or not is a highly individual one.
If you’re going to take part in a support group, Trance says being consistent about participating will help make it more worthwhile. “Typically, the more people get involved and utilize the group by being open and sharing and coming consistently, the more they are going to benefit. You’re going to get more out of a group if you’re invested in it and using it to share your experience,” she says.
A need to share her own experience drove Nicki Boscia Durlester, of Ventura, California, to establish a popular Facebook-based support group called Beyond the Pink Moon. But she didn’t initially set out to establish a vibrant online community for anyone with a connection to breast cancer. Rather, the 60-year-old former executive recruiter simply self-published a memoir about her experience as a BRCA2-positive breast cancer survivor called “Beyond the Pink Moon.” Someone suggested she set up a Facebook page to support the memoir, and in 2010, she did.
Durlester says initially, the support group started out slowly with patients and survivors sharing their stories. Over time, it’s gathered steam, and the Facebook group now boasts more than 6,000 members in 40 countries. Durlester runs the group with the help of a partner she’s never met in person, Melissa Johnson Voight, a BRCA1-positive cancer “previvor,” who didn’t have cancer but opted to have prophylactic surgery to remove her ovaries and both breasts in hopes of avoiding it, given that her BRCA1 genetic mutation put her at significantly higher risk of developing the disease.
In addition to providing breast cancer patients and survivors a safe place online to post pictures of themselves , ask questions and share their stories, Durlester also shares new and current information about research into breast cancer and other articles posted on major news sites so that members can stay informed of developments and potential pitfalls to their own treatment. Voigt, who Durlester calls “the minister of the Pink Moon,” posts meditations, prayer lists and other inspirational items.
Administering the group is now mostly a full-time job for Durlester, who says the project has become a labor of love and a calling. “I’m trying to save the world one breast at a time,” she says. In addition to posting articles and commenting on what members share with the group, Durlester has also recruited some oncologists and surgeons to post as well, as a means of providing current and useful information to group members. This mirrors what Trance says in-person support groups at the James provide when a doctor or nutritionist will present on a topic that the group may find useful.
Knowledge is power, after all, and providing a safe place in which to pose a question or gain insight from experts and people who have been through similar dilemmas should be the primary goal of any support group, whether it meets in person at the hospital and has 10 local members or meets online and is accessed by thousands from around the world. Any and all of those connections offer patients ways to learn, grow and arm themselves for whatever may lie ahead , Durlester says. “I truly believe we’re saving lives. I think because of our group women have become educated. They’re doing screening and living healthier lifestyles.”
Trance recommends that patients who need more support try out a group to see how it works for them. If the fit doesn’t seem right, she says “That’s OK, too. When it comes to support, it’s a lot of trial and error with what works and what doesn’t. The point is to reduce isolation and hear how others are dealing with things,” she says. If you can find that in an in-person setting, that’s great.
But for patients who aren’t comfortable with this format, Durlester says opening up online may be easier. “I think people are more comfortable behind a computer screen rather than being in a room looking at someone. This platform has been empowering for people, especially those who are feeling scared in the middle of the night. You can sign on and someone is there to listen.” She says the main goal is to let members know, “you’re not alone and you are loved and lovable. You can get through it, and it’s not a death sentence. There are people who have walked in your skin.”