Women with Fibroids Movement: Part Three—Living With Fibroids “Affects Everything You Do”

“I think we can agree on one thing: that we all woke up one morning and whatever the focus of that day was, that changed. What is up with this bleeding? What the heck is up with the clotting?” – Patricia

Seven years ago, I had the first real health crisis of my adult life. After several months of denying obvious signs that all was not well with my digestive system, the day came when I couldn’t eat anything without pain. I remember one episode of pain so crippling that I lay crying on my bedroom floor in the fetal position, unable to even drag myself to the emergency department just metres from my home.

Over the next several months, I saw lots of doctors, none of whom could tell me what was wrong with me, and some of whom implied that there was nothing wrong with me. I spent a lot of money on different therapies. I was prodded and poked, and had tubes forced down one end and up the other.

Desperate for relief, I put myself on a very restricted diet. I retreated from social life—believe me, you’ll never understand how much our social lives revolve around food and drink [...] continue the story

Women with Fibroids Movement: Part Two—Menstruation, the Last Taboo

Roughly one of every three women will suffer from abnormal uterine bleeding at some point in their lives, writes advocate and award-winning journalist Holly Bridges in The UnHysterectomy: Solving your Painful, Heavy Bleeding Without Major Surgery. She’s one of them, having suffered with uterine fibroids for almost two years.

Holly is one of the 15 Canadian women who have kickstarted a movement to advocate for timely and appropriate care and treatment of uterine fibroids and other common causes of abnormal uterine bleeding. Although a small group, they represent the universe of women suffering physically, emotionally, socially and economically throughout the whole patient experience, from living with symptoms to diagnosis, treatment and followup. It’s a journey that begins with isolation and fear: “If someone would have told me in 2007 while I was sitting on my toilet at 2 a.m. being up to my knuckles in blood clots and bleeding, crying my eyes out because I thought I had cancer, that I would be standing here in 2013 with other women who’ve been through the exact same thing as me, it probably would have given me a lot of hope. Because perhaps there would have been somewhere for me to go for [...] continue the story

Women with Fibroids Movement: Part One – Finding a 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

How Medical Screening Turns Healthy People into Patients Alan Cassels at TEDxVictoria

How Medical Screening Turns Healthy People into Patients.  Alan Cassels at TEDxVictoria A drug policy researcher for the University of Victoria, Alan Cassels is a known for having a knack for finding and describing the chasm between what the market says and what science does in modern healthcare. Over the past two decades Cassels has spent much of his research energy studying clinical research and the marketing tactics of the pharmaceutical industry, turning some of that research into journalism and books, including an international best-seller.

 

The Walking Gallery of Healthcare

The Walking Gallery is a walking wall of individuals who wear personal patient narrative paintings on their backs. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation. While creating national health policy medical professionals and government officials are often more reliant on aggregate data sets, bar charts, graphs and statistics, rather than the whole picture of care, the personal patient narrative and the individual human face.

The Walking Gallery movement hopes to diversify the source content that is used to create the foundation for patient centered care policy, by infusing art imagery depicting a unique patient history or personal story.

An artist or artists will interview medical professionals and lay individuals to form a patient centric narrative. The artist will then create representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” will wear the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient [...] continue the story