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he
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."
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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
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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
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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
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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
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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.
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