What Support/Networking Groups Do Best

By Pat Battaglia, Coalition staff member and Common Ground participant with Theo Munson, Common Ground Support Group Facilitator

Merriam Webster defines a support group “…as a group of people with common experiences and concerns who provide emotional and moral support for one another.” Some research shows that participating in a support group improves quality of life. And it may even improve survival.* Connecting with others who “get it” in a safe, confidential group setting can help participants combat isolation, identify and work through difficult emotions, find solutions to practical problems, and learn strategies to help them cope with the challenges they face.

At the Coalition, our groups go beyond that dictionary definition to encompass much more, and we add the term “networking.” We encourage and empower our group participants to connect with one another during meetings and any time they need a listening ear. We know that it takes a village to see any individual from their cancer diagnosis through treatment and beyond, and our groups provide opportunities to build support networks among individuals who have “been there;” whose shared experiences can provide inspiration, insight, and encouragement.

The Coalition stands solidly on four pillars: Advocacy, Education, Research, and Support. It may seem that our support/networking groups rest squarely and solely on the support pillar, but in practice, they touch all four.

Support

Group attendees exchange informed sympathy and true empathy; through shared experience, they are able and willing to put themselves in another’s place. The caring and understanding exchanged is freely given and sincerely meant. All emotions are encouraged to be expressed – the good, the bad, and the ugly – which results in feelings of validation and being ‘heard’. Group participation provides a healthy outlet for honesty, struggle, and humor. Sometimes a good laugh is just what’s needed to lighten the load a bit and allow a pause for a deep, cleansing breath.

“In our support group setting,” shares Theo, “I sense the relief when participants recognize, ‘You felt that way TOO? I’m not going crazy?!’ And we can see the special bond when a few are having very similar experiences, whether they be medical or cultural or something to do with their families. We also celebrate how unique each person is and how much they deserve to be treated as individuals.”

It can be complicated to speak with family and friends about treatment details and feelings that accompany a life-threatening disease. Whether a group meets in a physical or virtual  room, participants can let their guard down, sometimes even figuring out in the safety of the group how to talk with their families, friends, colleagues, casual contacts, and health care providers.

Our group attendees understand that cancer affects the whole family, and are sympathetic to that. They also listen to each other’s dilemmas that are not cancer-related. Understanding that having cancer doesn’t protect a person from other adversities (such as other serious illnesses in their families or themselves, car accidents, or financial concerns), we can and do talk about anything: sex, death, money, and more. What happens in the political arena, not so much – unless the discussion turns to…

Advocacy

Advocacy happens on many levels. People diagnosed with cancer advocate for themselves when they honor their interdependence with others. Connecting with those who extend a helping hand and supportive listening ear along the way can help in a myriad of ways. The flip side of this coin is that longer-term survivors in groups become advocates for the newly diagnosed.

Some group participants have joined in the Coalition’s advocacy efforts at the local, state, and national levels. Legislation to reduce exposures to environmental chemicals that are known or suspected to cause cancer is a priority. Funding for research into the causes of and primary prevention for breast and gynecologic cancers is an ongoing need. And more timely disability coverage for those with metastatic disease is also on the Congressional table – for the fourth year in a row. Enough! We demand change!

Education

Access to up-to-date, evidence-based information is essential for those diagnosed with cancer and their supporters. At the Coalition, we strive to keep our survivor community empowered with the latest, evidence-based information. Well-informed survivors sharing their experiences at group meetings are in a perfect position to pass valuable information to their more recently diagnosed peers while offering support and reassurance.

During support/networking groups, a great deal of information is exchanged. Not only do participants share a multitude of treatment details, they talk about complementary therapies that helped (or didn’t) and other comfort measures. They will “go there” about the annoyances of tiny veins, constipation, neuropathy care, itching, diet, vitamins, and side effects. We hear questions like: “What is really known about occasional alcohol use?” “Who is willing to talk about treatment for depression and anxiety?” “What are the best websites to consult?” “Where can I get more information about a plant-based diet?” And so on. Survivors are a wealth of information, and their input drives our educational programming.

Research

Cancer survivors have much at stake in the research process, and many group participants are participating – or have participated – in research studies at their treatment centers. Some have even traveled to institutions far from home to explore clinical trials for which they qualify. The newest treatments bring hope. It’s also meaningful to be pioneers, advancing scientific inquiry so that more people will experience the benefits of a new approach to treatment. A few have become active on the Coalition’s Research Committee to lend their voices as survivors to the process of awarding research grants.

A sense of belonging

A support group is a democratic phenomenon. With a facilitator present to watch over the conversation, the time, and the group guidelines, it is important to remember that person is “on tap, not on top.” It is the participants who are invaluable; those who bring their questions, fears, triumphs, and challenges to the table. Sometimes it is the quietest person present, or an otherwise unlikely contributor, who will have just the perfect thing to say in the moment.

Drawing on her deep and longtime experience in grief work, Theo shares her favorite quote: “When it comes to grief, all people are like all others, like some others and like no others.” The same is true for support group attendees, who experience a mix of raw emotions, including grief.

For those who say “a support group isn’t for me,” we ask you to consider it again. And come in just a couple of times to check the process out. You may be surprised at the sense of belonging you feel.

https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/support-groups