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.no more silence

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

  • Fibroids Movement Series
  • Women with Fibroids Movement: Part Six—“Sheros” Wanted!

    Posted on by Lisa Ferguson with Zal Press

    Women across the country are banding together to advocate for timely and appropriate care and treatment. The uterine fibroid patient advocacy movement is creating an organized and unified patient voice, the first step towards being taken seriously by the medical community—as opposed, Patricia says, “to being seen as a lot of screaming women, which is kind of what we’re taken for now.” More women like Mercy, who had the courage to find her own solution, are connecting to each other, learning from their empowering and motivating experience: Even when a woman is armed with knowledge about abnormal uterine bleeding treatment Read More…

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  • Women with Fibroids Movement: Part Five—Face to Face with Your Physicians

    Posted on by Lisa Ferguson with Zal Press

    Information is powerful. When you’re ill, it’s your right to be given the information you need to make the best decisions for you and your body. A question is a powerful thing, because it yields information. Ask as many questions as it takes to understand your condition and your treatment options. Ask questions like your life depends on it—as we’ve learned from the stories told by the women leading the uterine fibroid patient advocacy movement, it kind of does. It’s important to ask smart questions. We’ve made it easy for you. Here are the top questions to ask… When you Read More…

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  • Women with Fibroids Movement: Part Four—Information is Power

    Posted on by Lisa Ferguson with Zal Press

    Practitioner-patient interactions can represent a potential barrier to timely and appropriate diagnosis and treatment, as we learned in a previous post in this series. In the prolonged and confusing healthcare journeys that some of the 15 women at the forefront of the uterine fibroids patient movement have gone through, practitioners have sometimes diminished their suffering and denied them information: “After a million trips to my GP, he told me to just try putting up with it.” “I asked him about my test results. He said, ‘You wouldn’t understand.’” So how do you advocate for yourself and speak confidently with your Read More…

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

    Posted on by Lisa Ferguson with Zal Press

    “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 Read More…

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

    Posted on by Lisa Ferguson with Zal Press

    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 Read More…

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  • Women with Fibroids Movement: Part One – Finding a Voice

    Posted on by Lisa Ferguson with Zal Press

    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 Read More…

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A Picture of Health

In 2007 a team of photographers went across Canada to document the health care delivery experience of marginalized, remote and vulnerable populations.

Their cameras uncovered the stories of “invisible minorities” – people who have barriers to health care either due to where they live or how they live. They are found on the fringes of civilization. They are living among us in the inner city. They suffer from unseen illness or systemic social barriers. These photo essays give us all an exclusive look into an experience that is very Canadian, but foreign to most of us.

The Frontline Health collection is presented in collaboration with the Canadian Public Health Association. See the first 7 photo essays from the selections below. New stories will be released every month over the next year. (more…)

Suddenly, Cancer is the funniest joke in NYC

So who says you can’t laugh at Cancer?

This past week, the audio recording of Tig Notaro’s comedy stand-up routine about her breast cancer diagnosis last summer turned up on Louis CK’s site for a $5 download. Here’s an excerpt of Louis’ reaction:

The show was an amazing example of what comedy can be. A way to visit your worst fears and laugh at them. Tig took us to a scary place and made us laugh there. Not by distracting us from the terror but by looking right at it and just turning to us and saying “wow. Right?”. She proved that everything is funny. And has to be. And she could only do this by giving us her own death as an example. So generous.

Now New York City is about to turn Cancer into the funniest joke in town. First off-Broadway and then Columbia University will celebrate the art of laughing at cancer.

On October 19, the 2011 Canadian Comedy Award winner for Best One Person Show headlines the prestigious United Solo Theatre Festival just off-Broadway. Daniel Stolfi turns his tussle with non-Hodgkins Lymphoma at the age of 25 into a tour de force of dramatizations, characterizations, humiliations and exhilarations. He takes on stigma, icons like Lance Armstrong, and confronts the assault on his hair, his sex drive and his machismo with flair and flamboyance that leaves you belly aching and heart aching. Then he dances, like no Cancer can dance at all.

At Columbia University on November 7, Will Reiser of last year’s feature film “50/50” delivers a speech at the prestigious Narrative Medicine program. Doctors studying the art of narrative competency will be listening to this career funny man describe how he turned his personal cancer journey into one laugh track after another in the hit film starring Joseph Gordon Levitt and Seth Rogen.

Imagine. A roomful of doctors, who are studying serious literature to learn how to better understand patient stories to improve their practice, are going to be listening a young hellcat storyteller. Now this is progress! Its recognition that valid story comes in many forms and that comedy holds equal weight in the battle of creative expression.

It’s also recognition that comedy makes a seemingly tough subject like cancer digestible by the public. The TV series “The Big C” starring Laura Linney, is about a suburban mother, diagnosed with melanoma cancer, who tries to find the humour in the disease. According to WashingtonPost critic Hank Stuever: “It’s for people who are repelled by the warm-fuzzy, disease-o’-the-week dramas of cable television.” And the darkside series “Breaking Bad” turns a high school teacher’s cancer diagnosis into a life of crime that takes many funny and bizarre twists.

Laughing at cancer is no longer taboo. If you’re in New York City this week, take in “Cancer Can’t Dance Like This” and get your belly aching.

  • More Stories That Can Make You Laugh, and maybe cry a little too

When Nurses Grieve

By Christine Jonas-Simpson June 27th, 2012

I watched the tears drop from my nurses’ eyes as they gently took my blood and when they hugged me goodbye at the end of their shifts. My sweet curly red-haired son died and was born still after his cord knotted when I was 37 and a half weeks pregnant – he was nearly 6 pounds. My nurses and family remained by my side, the specialist who induced me followed up on his day off and my family doctors cried with me at home.

I was deeply moved and comforted by my caregivers’ expressions of grief. While I was living my worst nightmare I could not help but wonder what it was like for my healthcare colleagues to grieve and bear witness to our devastating loss. As a nurse I experienced grief of my own patients as well as identified with their families’ losses – these moments transformed me.

When my son died in 2001, I could not find research on nurses’ experiences of grieving when a baby dies and how this changed them. Healthcare professional grief was and continues to be hidden and not often discussed. Given I was a nurse and a researcher, I decided to invite my colleagues to explore nurses’ experiences of grieving with me through the use of digital video in order to create a research-based documentary. I chose this medium to conduct my research so I could share my research to a broad audience.

I also wondered how mothers lived and transformed with the loss of their babies. Again, little was known of mothers’ experiences when a baby dies and so I decided to do my own research using the arts and film. Today I am working on a fourth documentary exploring children’s experiences when a baby sibling dies; another hidden and often unrecognized grief. Fathers, who are also often overlooked, are included in this children’s documentary.

It is my hope that these documentaries of grief, loss, resilience and transformation open up spaces for sharing experiences with one another and that we as a society will embrace grieving and loss as a natural human experience so we can feel less isolated and alone. These films are my son, Ethan’s, living legacy and reflect the love and continuing connection my family and I have with him.

 

  • More by Christine Jonas-Simpson

Disability Horizons – A Dynamic Duo

If you love socialising, travel or adventure; then this is definitely for you!

In November 2010, two disabled guys from London, on a roadtrip in California, dreamt up a huge project they wanted to bring to the world. Imagine two lifelong friends, two electric wheelchairs, two Personal Care Assistants, a hoist and an accessible car stirring up a big cocktail of imagination and innovation, during a dream adventure.

This idea was to start an online disability lifestyle magazine like no other…

Martyn_Srin_SFAfter months of working hard to turn the vision into a reality; Martyn Sibley and Srin Madipalli launched www.disabilityhorizons.com. Disability Horizons pioneers an innovative 21st century approach to disability by empowering an aspirational community to provide and share content that informs, inspires and entertains.

The Disability Horizons community is already 20,000 strong. Their readers write the articles, share their wealth of disability knowledge and progress towards their individual dreams together. Articles include personal stories on employment, sport, travel and relationships. The guys share many of their own daring escapades and have regular article contributions from high profile organisations, service providers, politicians, celebrities, entrepreneurs and various opinion formers that have the power to shape and change lives.

There is a page for readers to pose their own questions, an area to post unwanted disability items (the classifieds section), a resources profile page for disability companies to share useful products/services, and the Disability Horizons ‘Travel Zone’.

In honour of the Paralympic Games, Disability Horizons has graciously agreed to share some of their stories with us. The insights continue to grow our understanding of how people around the world have common and uncommon experiences in managing life limiting conditions.  The Dynamic Duo at Disability Horizons are breaking new ground and give new meaning to the old phrase “walk the walk”.

 

  • Stories from Disability Horizons
  • Sparks of Change

    Posted on by Martyn Sibley

    25. Mar, 2015 Peaks and Troughs. Ebb and Flow. However much I strive for consistency, it always seems to evade me. Partly because I guess ‘that’s life’. Partly because I seem to like to mix things up! I tend to regularly kick off new challenges. From finishing 2014 tired, living back home, and struggling with a deterioration in my disability. I’m now in a new flat, building my health back up, and fighting (tooth and nail) for improvements on my wheelchair, car, care and housing adaptions. I was lucky to spend time in Fuerteventura and Austria since the New Year Read More…

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  • Discovering my last taboo

    Posted on by Disability Horizons

    By Ben Davies In this article I am going to explore the morality of paying for the company of a female or indeed male if you are a disabled person. But first I am going to talk about relationships and the potential barriers I feel exist as a disabled person. I personally really struggle with relationships and socialising full stop, whether it’s going the pub with the boys or chatting someone up. I simply cannot do it as my confidence in this area is really low. Overall I’m ok with the boys as we talk about football and drinking, the Read More…

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  • Max’s journey

    Posted on by Disability Horizons

    By Nicola @nickynoona My story is about my son Max who is now 12 years old and has Asperger’s Syndrome. Max was born a healthy 7lbs 10oz in the hot summer of 1999. From day one he was an easy baby. Always happy and placid and rarely cried or threw tantrums. I counted myself very lucky to have such a content child. Max was walking by 11 months old and was ahead of other children with his talking too. I was not worried about his development or behaviour in any way. Coming up to Max’s second birthday I had been Read More…

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  • Planning an accessible wedding

    Posted on by Disability Horizons

    By Carrie-Ann Fleming Almost 2 years ago, in November 2009, my boyfriend Darren surprised me with a candlelit anniversary dinner, which ended in a romantic proposal. I was ecstatic, and friends and family were thrilled for us. After celebrations came the questions about when we would get married, and what we were planning… which was a daunting prospect! As a wheelchair user, I really didn’t know where to start with all the preparations, how exactly do you plan an accessible wedding?! The first thing to decide on was the venue. We ruled out a church ceremony, as neither of us Read More…

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  • Matt’s marathon

    Posted on by Disability Horizons

    Matthew King from Bedford, who is about to start his career as a lawyer, completed the New York marathon in 2007 in his chin controlled powered wheelchair, which he uses as a result of a spinal injury. Matt kindly shares his experience of travelling to New York and taking part in the marathon. By Matthew King My name is Matthew King, and in 2004 at the age of 17 I broke my neck playing in a game of rugby, and have been left paralysed from the neck down and dependent upon a ventilator to breathe at all times and use Read More…

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  • The lasting effects of a temporary disability

    Posted on by Disability Horizons

    By Margo Milne Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult? When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again. Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in Read More…

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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 than The Waiting Room.

The Storytelling Project gives us a preview of many of the film’s individual stories and a background to understanding the film’s effort. The project delivers content across several different platforms including the film; a web component that shares cultural data and cross media material generated by staff and volunteers; a mobile application; and an interactive platform accessible to patients in the waiting room of Highland Hospital. The objective of all of this programming is to give “hospitals, policy makers, journalists and the general public a greater understanding of the evolving relationship between public policy and people’s lives.”

The beauty of The Waiting Room is that the patient voice is clearly heard, but not without the equally important views of the doctors, nurses and hospital staff. A real sense of an interconnected community is depicted by these stories. The hardships and struggles that we are learning about are not isolated; they are a part of something much larger and more difficult to comprehend. I think if there is any chance of improving the imperfections of public health care, it makes sense to have a balanced understanding of the opinions of employees who deliver care and the patients who rely on it. The Waiting Room has provided a structure for this understanding of opinion with its storytelling project. The weight and usefulness of this initiative now depends on the willingness of the viewers to understand the voices which have been given a platform to be heard. Editor’s Note: Mitch Houlahan is our Associate Story Editor and has put together our feature on the “Waiting Room”. Mitch brings some interesting perspectives to the project, among which are his youthfulness, his political science education and his medical system interactions as a result of serious sports related injuries. Compared to a much different Canadian health care system, the realities around a US public hospital have been a real eye opener.

 

  • Stories from The Waiting Room