Formalizing the menstrual disorder patient movement: is it possible?

By Zal Press and Holly Bridges

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa These words by Mother Teresa are a motivational mantra of sorts for Canadian women who have come to a fork in the road in their fight against fibroids and the debilitating heavy menstrual bleeding they cause.

What is the future of the movement? Where does it go from here after two national gatherings?  Is it time to form a non-profit foundation or social enterprise?

The movement to create awareness of fibroids and heavy periods in Canada is now some 8,000 strong, between Canadian Women with Fibroids, The UnHysterectomy and the Alberta Women’s Health Coalition. While these groups are working hard to raise awareness and bring hope, it could be argued that their work has a long way to go before becoming a household word. To-do list The leaders of these groups all agreed at their most recent gathering in Toronto that something must be done:

To increase awareness of menstrual disorders; To work with the medical community, policy makers and politicians to change the way our society perceives and treats menstrual disorders such as fibroids; To increase access to better, faster, more equitable treatment in all regions of Canada;

To advocate for and support women who are suffering in silence, and; To formalize the patient movement to generate more support, whether [...] continue the story

Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges Given the complex and frustrating journey so many women with fibroids must endure, what can women do to take more command of the journey and get better outcomes for themselves and others? We have heard how greater awareness of treatment options can empower women to advocate for themselves with their physicians. We have even heard from physicians themselves encouraging women to do so.

This kind of self-advocacy can make a huge difference on an individual level. But to drive real change in practice, the collective voice of women across the country needs to be leveraged. System change and health reform that will impact the lives of millions of women, not just one, is the result of collective advocacy. And that is what we’ve come to understand as a movement.

“You can spend a lot of time admiring a problem but no change will happen until you push on the systems that are causing the problem or the barriers that are preventing you from moving in new directions,” said Carmen Wyton, a social innovation champion, chair of the (Alberta) Premier’s Council on the Status of Persons with Disabilities and head of a new Alberta Women’s Health Coalition.

The recent gathering [...] continue the story

A Patient Movement Finds Its Voice

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 [...] continue the story

The Waiting Room: Mitch’s View

By Mitch Houlahan

The Waiting Room is an intimate exposure of the personal battles occurring within the walls of Highland County hospital, peering into the lives of people who often need public healthcare to survive. I’m sure anyone can recall the emotions which can emerge in any type of public waiting room; although the difference between renewing a driver’s licence and refilling a child’s prescription is fairly obvious. The Waiting Room has taken on a difficult task of expressing the daily routine and atmosphere of an extremely busy public hospital where the majority of patients are uninsured.

The Waiting Room is not a film in isolation. It is part of a comprehensive Storytelling Project that connects the audience on a personal level, to make us feel closer to the person who must navigate through the public healthcare system for themselves and their family. It is very likely that the majority of viewers (including myself) will be unable to relate to the experiences shown in the film; but the value of the film will be measured in the awareness it stands to generate. Filmmaker Pete Nicks gives the prominent role to the voice of the patient – it couldn’t get much more firsthand [...] continue the story

Patient Stories at The Fringe

Two weeks ago we shared news on two patient storytelling events that will take place during this year’s Toronto Fringe Festival.

After a more thorough review of the festival’s listings, we’re pleased to announce that we found three (3) more. With the Fringe opening it’s doors tomorrow we felt it was an appropriate time to list all of the patient performances, whether chronic illness plays a starring role or is simply an undercurrent to the performance’s plot. Healing Through Theatre Host: Brian G. Smith (Second City Alumni) Panel: Zal Press (Patient Commando),  Dr. Jeremy Rezmovitz (Sunnybrook Hospital), Daniel Stolfi (Cancer Can’t Dance Like This)

Eat Poo Love  By: Paul Clement, Evan Mackay, Dan Mackay Cast: Dan Mackay, Evan Mackay, Paul Clement

Paul Clement survived Stage 2 Colon Cancer and went on to blog about it (selected blogs available here), and eventually co-wrote a stage version of the blog which will be performed at the 2012 Toronto Fringe Festival as “Eat, Poo, Love”.  He recently appeared on the RogersTV program ‘daytime Peel’ to discuss his journey through the illness, and his fundraising work with Colon Cancer Canada.

Mum And The Big C By: Lynne Kamm

Stamped: A Story About Daniel, Who Happens to Have Autism By: Sarah Magni

21 Days By: Tabia Lau, Music by Mary Lougheed

If you know of patient performances that we have [...] continue the story