When I first began researching what it’s like to live with hypertrophic cardiomyopathy (HCM), I thought I had a fairly good idea of what I was about to uncover. As with many long-term health conditions, I anticipated people would face significant challenges and choices, treatment, and surgeries and not least the fear of a very real (but small) chance of sudden death. But as I dug deeper into the experiences of people living with HCM, I came to realise just how far-reaching its impact goes – well beyond the person who is diagnosed. It is never only just about them; it impacts entire families and has an emotional, psychological, and practical impact on everyone, and not in a way other conditions I have researched can do.
One of the biggest surprises for me was understanding the ripple effect HCM can have on a family. As a genetic condition, HCM doesn’t just affect the person who is diagnosed, it affects everyone biologically related. Once one person is diagnosed, the rest of the family should also be screened and tested. This revelation hit me harder than I expected because it wasn’t just about one person facing this life-changing diagnosis. It meant that parents, siblings, children, aunts, uncles, and cousins – anyone connected biologically – might be at risk, and they would all need to face the reality that they too could have HCM.
The genetic nature of HCM presents an added layer of complexity. It’s not just about managing the condition yourself; it’s about the guilt of potentially passing it down to future generations, or the uncertainty of whether a loved one could also be silently living with it. In the conversations I had with people who live with HCM, this was a recurring theme. They talked about an overwhelming sense of responsibility that comes with knowing that you could have inadvertently passed on, or be the reason someone is tested for, a condition that could drastically impact the lives of those you care about.
The emotional toll is often hidden behind their physical symptoms, but it’s very real. Some people living with HCM shared a constant feeling of uncertainty, not knowing if the next physical exertion could trigger a life-threatening event. And this fear and anxiety also extends to family members. It shapes relationships, it affects family dynamics, and it can lead to feelings of isolation, frustration, and helplessness for everyone.
So, my biggest takeaway from my work to understand the experiences of those with HCM, was the realisation that – while many health conditions primarily affect the person who is diagnosed – with HCM, the entire family carries the weight. The emotional and psychological burden of knowing that you may have passed on a genetic heart condition to someone you love is immense. It’s a weight that families bear together, and it’s clear that the ripple effects reach far beyond the individual. HCM is not just a physical condition; it’s an emotional journey for entire families.
