Representing women with heart disease

The torso and shoulders of a young woman with long brown hair wearing a floral shirt. She has her hands placed on her chest, one on top of the other.
Photo by Fa Barboza on Unsplash

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.

6 comments

  1. I am a woman with heart disease and I recognise all the things you mention in terms of the ways women present differently in their symptoms and how they are less likely to know their vulnerability. My diagnosis at age 58, running (ok shambling through) 5 marathons was a huge unwelcome surprise. Thank you for creating a community for us.

    Liked by 1 person

    • Gosh, 5 marathons?! Even if you did shamble through them (I’m sure you didn’t) that is a mighty feat!

      I chat to people on a few online heart disease forums and it’s incredible how many are diagnosed completely out of the blue, despite being active and following a healthy lifestyle and diet. I guess otherwise-healthy people with heart disease are another seriously under-represented group, and a group who might not expect any symptoms to be a sign of a heart condition. Really important to show the diversity of people affected by heart disease, whether in terms of lifestyle, gender, age…etc!

      Thank you so much for being the first person to leave a comment on this blog! I hope you’ll contribute your thoughts again some time 🙂

      Like

  2. Hi very well written and very true, as in the previous comment I was also 58 when I was diagnosed with dilated cardiomyopathy and heart failure, I am now on the transplant list, the treatment I have received has been excellent but I feel an awful lot more could be done for mental health, I have found it very hard to think about the future, with or without a transplant

    Liked by 1 person

    • Are you the same Char I used to chat to on the BHF forum? Great to hear from you if so! Last time I heard from you was just around the time you went on the transplant list and I’ve often wondered how you were getting on.

      I agree with you re mental health and, even with excellent care and support on that front, as I was lucky enough to receive, it would always be a major challenge, I think. Definitely something that patients, carers and professionals need to be aware of and prepared for.

      It’s been so great getting these comments today and getting a bit of conversation going on here l. I’ll definitely follow up in future posts on the topics that have been mentioned. Would be great to hear more of your thoughts when I do.

      So lovely to hear from you and I hope all is going well. Keep in touch! 🙂

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  3. I had a heart attack at 37 following a general anaesthetic, and stumbled across the BHF and yourself and several other supportive ladies. I was so lucky to have this- in a very scary and confusing time.
    One of the major feelings for me was embarrassment- a feeling that it was totally my fault. It made it even harder for me to tell other people, I totally shut myself away from others for a few months. I was overweight, but I exercised regularly- and had been taking medication in which my weight had increased and increased but couldn’t stop taking this medication (on recommendation of my doctor).
    The night I had my heart attack I was told I wasn’t having a heart attack by the paramedics, but i should probably get checked out. I sat in a&e for three hours waiting to be seen, to then be sent on to a specialist hospital. Once there, the doctor did an echocardiogram and told me I was likely having a heart attack- but the next day another doctor popped in and said he didn’t believe I had had a heart attack because of my age and sex, I never saw him again. Going into an angiogram after being told you probably don’t need it, and reading about the associated risks, it was so scary. I had high levels of anxiety following and signed up to CBT- which was great, but I do think mental health support linked to cardiology services would be so helpful.
    I am so grateful to the group of ladies I met on BHF, you Laura in particular are a support to all of us.

    Liked by 1 person

    • Hi Hayley! Great to hear from you here on the blog 🙂

      I also feel really lucky to have found our group and connected online. It makes such a difference to speak to people who have some of the same concerns and priorities and just to feel a bit more…average? I just wish it didn’t take so much detective work to find and make those connections. Imagine how much easier the mental/emotional side of your experience would have been if you were already aware of other young, fit people having heart attacks.

      My mental health care WAS directly linked to cardiology services and it was massively helpful, but I know I’m very much in the minority with that experience and was so lucky to land in a department with those facilities. I agree the services should be more closely linked. The statistics linking heart disease and mental health make that need seem pretty obvious to me. Hopefully progress is being made there, but definitely more public visibility of those experiences will help the cause.

      Thanks so much for sharing your story here, Hayley. Hope to hear from you on future posts and I’ll catch up with you soon!

      Like

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