Do you remember the last time you felt you weren’t being listened to? Remember how angry it made you feel? Now imagine that anger multiplied by 15.
Back in October, we introduced you to a group of 15 women behind a fledgling patient advocacy movement. They came to Toronto from across Canada this past summer to share their anger over a shared experience: of having their pain diminished or ignored by society and the healthcare system.
These women are living with, and suffering from, uterine fibroids (UF) and similar debilitating conditions—and not being heard. In a safe, non-judgmental environment, these women felt free to share stories that needed to be told—stories of years of severe pain, embarrassment, and humiliation. Often, these stories had never been told before.
Sure, lots of anger was expressed throughout the day. But the women discovered—through the mere act of listening to each other’s stories—a new meaning and purpose to their experiences. Becoming more conscious of the myths that had defined them—the biggest being that the only treatment available is hysterectomy—and of a collective narrative of not being listened to, the women decided to unite their voices on behalf of others who are suffering in silence:
“We are speaking today for all the women out there who are still on their toilets at two in the morning passing blood clots and being desperate, and not getting the answers that they need from their doctors, and I’d like for all of us to keep those women in mind. Those women whose personalities might not be as strong as us, whose voices might not be as strong as us, I’d like us to keep those women in mind today as we move forward and remember that the underprivileged, the under-educated, the under-resourced women of our country are being starved of information even more than we are. Let’s keep those women in our minds and hearts today and hopefully we’ll have some solutions that will help all women.”
And so a movement was born. The 15 women are up for the challenges and hurdles they will face as they build their movement’s membership, refine its mission, and amplify its voice. As Patricia Lee reminded the others, even though they may sometimes feel like they’re swimming upstream, they truly are pioneers in empowering other women to advocate for timely and appropriate care and treatment:
To support the movement in its mission to create and empower a collective voice of Canadian women suffering with these conditions, we’ll be sharing these women’s real words and experiences in a series of posts over the next several weeks. By sharing these stories, we hope to:
- improve awareness and understanding of UF and similar conditions to improve women’s treatment outcomes,
- equip women with valuable resources, including tools to improve communication skills with their physicians,
- connect women to each other so that they can tell their own stories, share information, and learn from their collective experience, and
- empower women to become their own best advocates of their own healthcare.
In the next installment, you’ll hear personal stories that speak to the societal bias against menstruation that keeps some women suffering silently.
To see all of the Fibroid Movement videos click here.
Illustrations © Leah Silverman, discoverydoodles.com, for Sandpile Inc. July 20, 2013