Is it a sense of duty, compassion or something more primal?
When someone close to us is critically ill, or passes away, our immediate instinct is to gather together. To connect. To share. To laugh and to cry.
Fibroid community is growing
The recent Uterine Fibroid Collaborative Forum held in Toronto (the second in two years), where women with fibroids and expert gynecologists gathered together for the first time, was a salve of sorts -a grassroots coming together of women whose lives are at the mercy of their own bodies, disabled by monthly bloodbaths that leave women feeling desperate, exhausted and alone.
In other words, the collective suffering of these women, and their growing frustration over a lack of access to timely and effective treatment options, has created a new and growing community of Canadian women who are desperate for change.
Their mantra is clear
Our suffering is real, we deserve better and we are stronger as a community.
We are tired of waiting years for proper diagnosis and treatment.https://youtu.be/
We are tired of a health care system that seems to put us last.
We are tired of being tired.
Whether through social media, word of mouth or a gentle nudge to join from a core group of women who are leading the charge, the size of the community of women with fibroids is growing, mostly organically, and remains mostly virtual.
Size of community
The community is pushing 8,000 so far, with more than 5,200 members and growing of Canadian Women with Fibroids (CanFIB) on Facebook (founded by fibroid survivor Pat Lee), almost 1,500 on Hysterectomy Alternatives on Facebook (started by UnHysterectomy author and fibroid survivor Holly Bridges) and several more belonging to the new Alberta Women’s Health Coalition(co-founded by Carmen Wyton, who is also the chair of the Alberta Premier’s Council of the Status of Persons with Disabilities).
“If there’s one thing I find on the Facebook group, it’s women come for the first time and say ‘Thank God I found a place where somebody understands,” said Pat Lee.
Not formally organized
The fact that this fibroid fighters community remains largely informal, without any real structure, speaks to its very raison d’être.
For the most part, members are in the prime of their lives, in their 20s, 30s, 40s and 50s, when they need their energy the most. Their schedules are packed with responsibility, working, raising children, volunteering, coaching soccer, car-pooling, caring for aging parents or approaching menopause.
The last thing they want is more responsibility.
Bit by bit by bit
Yet the fibroid forum was a big step towards formalizing a Canadian fibroid community, one that continues to offer women a safe place to meet, share their common experiences, learn and vent.
“Communities help people evolve and gain new perceptions, empowerment and strength,” said Pat.
In fact, communities give us a sense of identity; they help us understand who we are and what we are experiencing so we can feel part of something larger than ourselves. And in doing so, we can build momentum towards achieving change.
“Lived experience is the most powerful place from which to speak,” said Mercy , a founding member of the forum. “No one can deny your story, so understanding it and communicating as completely and effectively as you can, in the most compelling way possible, helps you and others to get to that big picture idea of creating a society that works for everyone in the best possible way.”
The trick lies in patients and physicians working together to build a better, more accessible health care system for all.