It’s a common misconception that heart disease primarily affects men. The British Heart Foundation’s 2019 study ‘Biology and Bias’ examined the role of gender in the diagnosis and treatment of heart attacks and demonstrated that women were less likely to be concerned about having a heart attack, less likely to recognise the symptoms in themselves, less likely to seek help quickly, less likely to be accurately diagnosed, less likely to receive appropriate treatment, less likely to take part in clinical trials and, ultimately, MORE LIKELY TO DIE. This gender imbalance can be seen in other heart conditions too and the BHF have announced their commitment to addressing these in future reports.
Part of my reason for undertaking my PhD project was that I struggled to find stories of chronic heart disease. I felt the period following my diagnosis would have been less isolating and frightening if people “like me” had been more visibly represented in social and cultural imagination so that I could have imagined a variety of potential futures for myself. I’m committed to finding written stories of long-term heart disease that do exist, examining them and bringing them to the fore. You know what? I’ve found quite a few. Heck, I’ve even read some of them! And what have I noticed while reading them? So far NOT ONE adult female protagonist with heart disease.
I want my project to make a difference to real people and real lives by providing a platform for expression and representation. How can I study existing literary representations of chronic heart disease without exacerbating the gender divide? If there are no adult female protagonists with heart disease, how can I talk about and raise awareness of women’s heart-disease stories?
Well, I do know at least one adult female with heart disease. Actually I know a lot of them, but I figured I was as good a candidate as any to get the ball rolling, so I tried to write something about my experiences as a woman of child-bearing age with heart failure. I told the story of a conversation I had with a nurse the day before my daughter was delivered and how that went on to affect my identity as a new mother.
This piece, ‘The Host’, was by far the best and most honest thing I’ve ever written…but you’ll never get to read it. Why? I just didn’t feel I could share it. My writing portrays a less than maternal side of myself in a moment of vulnerability and casts doubt on my relationship with my daughter and on my identity as a mother. What if I shared it online and, five years from now, my daughter read it? What if someone desperate to have a child of their own (I know that feeling) was upset by my seemingly ungrateful attitude to motherhood? What if I really am not a good mother and this is picked apart and commented upon by anonymous readers?
There’s just so much baggage and responsibility and uncertainty that comes with having a female body, especially when it comes to sharing stories from that body, and if I (in what I know is a very privileged position of financial and academic support to explore these things) am unable to share an honest first-person response to a real-life experience, what hope is there for other women?
I felt I had reached an impasse but I’m not ready to surrender yet. Yesterday I took part in an online conference – Representing Women’s Health. I shared a video reading of my piece, which was made available only to conference attendees and only for a limited time. In a live Zoom Q&A session, I did my best to represent the heart-disease massive, sharing the little I know about the impacts of gender bias in the representation of heart conditions. I spoke about my frustration, given how desperately I want women’s stories of chronic heart disease to be told, over my self-silencing. I listened to researchers respond with examples of other women’s voices being silenced or ignored in relation to a variety of medical conditions. I can’t say I ended the day with any revelation or solution to the problem, but I certainly ended the day determined to keep fighting to see our bodies and their stories represented. What form will this fight take? I’m not sure exactly, but I’d love it if some of you would join me.