“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 until you can eat or drink next to nothing.
I missed a lot of work (I was fortunate to have an empathetic boss). A couple of times I even had unnoticed, yet nonetheless humiliating, “accidents” at work.
I lost a lot of weight (and I’m thin to begin with). I was tired and weak. I was overwhelmed, because my time and my focus were consumed by my malfunctioning gut. I was sick of tolerating the well-meaning but uninformed advice of loved ones, including the boyfriend to whom I was continually apologizing for being continuously stressed out. I was depressed.
Mostly, though, I was just scared, because I didn’t know whether I had something as innocuous as a food sensitivity or something as terrifying as cancer.
In short, this experience sucked.
Illness—even as relatively short-lived as mine—can be a life-altering experience. In the video below, Mazal Kimhi, one of the 15 women behind the growing uterine fibroid patient movement, describes how her life changed when she started bleeding abnormally:
No woman’s life should become smaller, as Mazal described it, because of a bleeding disorder. Sadly, navigating a straight path to a cure, or just simple relief, is challenging.
All of us—women especially so, perhaps—have been socialized to be passive in interactions with healthcare professionals. Even if we know about treatment options, we are expected to defer to “the expert.” Add the stigma of bleeding to the mix and the outcomes of consultations are often unnecessarily prolonged treatment journeys. Just take a look at the 5-year journey from symptoms to diagnosis to treatment shared by one of the movement’s founders.
Endometriosis in particular can make for a hellish journey, as Holly explains here:
A healthcare journey like that would leave any one of us feeling hopeless, vulnerable and defenseless, without the strength to advocate for our best interests. No wonder these 15 women are committed to helping others find their voice and become better equipped to take charge of their own healthcare.
We’ll start showing you how to do that in the next installment .
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 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…
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…
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…
“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…
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…
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…