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Photo of three women Making Connections - Women's Health Support Group
 
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The idea that women can help other women by sharing personal experiences is key to the women's health movement. In the early 1970s, these ideas were expressed through the creation of women's health collectives. Several founding members of the Boston Women's Health Collective (publishers of Our Bodies, Our Selves) described the creation of their group in a recent history.

As we talked and shared our experiences, we realized just how much we had to learn about our bodies, that simply finding a "good doctor" was not the solution to whatever problems we might have. So we decided on a summer project: we would research our questions, share what we learned in our group, and then present the information in the fall as a course "by and for women."








How has the legacy of these groups evolved in Canada?

Today the groups are more specialized - addressing specific needs associated with health challenges. There are diverse forms - from live online chats to drama groups. Finally, these groups are now increasingly accepted and studied for the important role they can play in protecting and supporting women's health.

The Benefits of Support Groups

In the last twenty years, researchers have attributed many benefits to support group participation. Studies suggest that support groups can improve quality of life, reduce stress and make prevention programs, like those that help women stop smoking, more effective. For women with breast cancer, significant physical benefits have also been attributed to support groups including pain reduction - and arguably - greater longevity.

I think the emphasis on survival rates misses the point, says Jennifer Keck, a woman living with metastatic breast cancer. Ms Keck helped create a research project to study women's experiences in her own Sudbury support group. She says most women attend to get information and emotional support from other women.

While both of these factors bring women to groups, they stay over time because of the camaraderie and sisterhood they experience from group membership. The concept of women helping women is a very powerful draw. It is not that women are not interested in longer survival- its just that measures we use to determine the validity of drug treatments are not necessarily what we should use when we explore the broader cancer experience. Women know this.

Jennifer Keck, researcher and support group participant

Support groups take many forms including groups that rely on a professional counselor and those grounded in the self-help movement. Traditional support group meetings involve women coming together to talk about their lives, their experiences and sometimes their fears.

It gives me that space once a month for 2 hours where I'm looking at the whole thing straight, and I'm not playing games, and I can just relax.

Michele, a breast cancer support group participant

In some areas, support groups are being formed by low income women and women of colour. That's important, because support groups have often been dominated by middle and upper class white women. Women with different backgrounds may not feel the sense of common experience that is an important to these groups.

Women looking for a support group can contact their provincial self-help networks for a referral to a local group. The Canadian Mental Health Association can also connect women with local resources as can the social work department at your local hospital. Many disease-specific groups now offer referrals to support groups through phone and mail services and increasingly on the Web.

Support Group Alternatives

For women who don't find the image of a traditional talking circle appealing, there are also a growing range of alternatives.

Initiatives like the Women's Cardiovascular Health Initiative integrate the idea of women supporting each other with a program of exercise and nutrition that helps women prevent (or recover from) heart disease.

I didn't have to think, is this the right time for me to be exercising? It was scheduled. Because it was structured, I knew those women would be there the next week - if I had a bad week they would commiserate, if I had a good week they would cheer for me. It's a support group in action, rather than just chatting, it's centred on doing.


Jane, Women's Cardiovascular Health Initiative participant

Also focusing on the power of doing, groups of women with breast cancer have formed Dragon Boat Teams. They race in public competitions to demonstrate the full and active lives they can lead. Many of the women involved say it's not a support group - its about action, notes Terry Mitchell, Psychosocial Researcher at the Canadian Breast Cancer Foundation Community Research Initiative. Still, in being part of this team sport, women report that they find tremendous support, camaraderie, and FUN!

Drama has also been an alternative for some women. Women living with breast cancer made up the cast of Handle with Care, a play, which later became a video. The script was based on women's actual experiences. The play had practical messages for family and friends about how to support women living with the disease, but making it was also a great source of support for the women involved.

We've had a magical time of discussion, learning, honest talk about living and dying?but mostly it has been a time of great laughter and love.

Jan, Handle with Care participant

Online Support Groups

Internet technology has enabled women to receive and give support even if they are too ill, busy or isolated to attend a support group. After being diagnosed with vestibular neuronitis, Laura struggled to finish her degree. But when she couldn't continue working after school, she found herself at home, with time on her hands, playing on her home computer. I was 25 years old and felt like my life was over, she says. She found an online forum for people with disabilities and eventually she created an e-mail list for others with vestibular disorders. Not only did she use the Internet to learn more about a disorder that few people know anything about, but she also found a way to support others facing the same frustrations.

The Internet has been a great benefit for people with rare conditions and conditions that are not widely known or accepted. The Canadian Organization for Rare Disorders links visitors to a wide range of support organizations through their online database. Women with stigmatized conditions like vulvodynia (shooting or burning pains in the vulva) can find information, as well as mailing lists that connect them to other women coping with this painful condition.

New support venues can be created quickly in the electronic world, notes Rena Clamen online community coordinator for Le Club features of Women's Health Matters. Last December, when we started to get feedback that women were feeling overwhelmed, or even depressed, about the pressures of the holiday season, we created a special discussion area where women could vent about what they were experiencing.

Le Club includes an expanding selection of discussion groups on women's health topics, as well as a general topics section where women can suggest new discussions or start conversations that aren't associated with an established discussion area. Women are learning about other women's personal experience with a range of issues including pregnancy, menopause, environmental illnesses and violence, says Ms Clamen. Le Club is continually growing to encompass a whole range of women's health concerns. We hope to build a vibrant community where women can share their expertise about what works, and support each other.

 
  Date published: March 1, 2002
  BulletThis article was prepared by Women's Health Matters is an initiative of The New Women's College Hospital and the Centre for Research in Women's Health.

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