A Personal Journey Through Misdiagnosis and Medical Invalidation
It’s 11pm, and I’m gazing at my baby’s sleeping face, feeling his warm breath against my cheek as I clutch my chest and wonder if this time it is the real deal. The pain is radiating from the left side of my chest down my left arm, and I can feel my heartbeat racing. I already know these symptoms warrant an urgent trip to the emergency room. But it would be the second time that week — and the sixth in total — I’ve attended, only to have an acute cardiac event ruled out.
My cardiologist doesn’t think it is a chronic heart condition either. I have seen him twice and was told that — even though my father died by cardiac arrest — he was “not stressed at all” about my symptoms being cardiac-related. More likely anxiety, he said.
I lay, wait, and scrutinise my symptoms to see if they get any worse. Then, the palpitations come… and off we all go.
Fast-forward a couple of weeks, and I’m back in my cardiologist’s office for the third occasion. This time, there is no smile or friendly hand gesture into his office — only a silent walk down the corridor until he reaches his desk, where he sits with crossed arms. The look in his eyes tells me I’m a hypochondriac — a silly, neurotic person wasting his time.
I’ve come back to demand a referral for an angiogram with coronary flow reserve testing. The evidence is now stacking up. The pains come after exercise. I’m breastfeeding, which means my estrogen is low (a risk factor for heart disease), and I have a family cardiac history.
In our last consult, he had denied me this referral and told me to “do the right thing” by my baby, claiming the test was too risky while breastfeeding. This time, though, I have come armed with peer-reviewed evidence that suggests the opposite. Besides, “doing the right thing” by my baby meant giving his mum proper healthcare, I told him.
To that, his eyes rolled, as he penned me the referral letter.
Amy teaching a fitness class in her early twenties. Image: Supplied.
Several weeks later. Now, I’m in the operating theatre, staring at a bright light and a sea of masked faces. A catheter has been inserted into my coronary artery, and now it feels like I’m being punched from the inside out, as some substance puts my heart under stress to see how it responds. I feel physically awful, despite the sedation… and rather silly, since I am still partially subscribed to my cardiologist’s opinion of me. Now I’m being ridiculed by him and the entire surgical team looking down on me, it feels.
But then comes the long-awaited result. A diagnosis of coronary microvascular disease (CMD).
What is CMD?
CMD is a type of heart disease affecting the small vessels that supply blood to the heart. It can present in seemingly healthy individuals and is more common in women, especially in phases of life when their estrogen is low, such as breastfeeding and menopause.
Unlike coronary artery disease, it is not always caused by a visible blockage. It can either be a structural issue or something functional (where the endothelium stops working as intended). The angina that comes from CMD — a.k.a. “microvascular angina” — is more likely to occur at rest and can bring on a range of other symptoms, such as breathlessness, nausea and malaise.
When persistent, it carries a 16.6 per cent composite risk of cardiac death, heart attack, heart failure and stroke within five years.
Two weeks later. In light of these stats, I hastily booked in with my cardiologist again to discuss treatment options. I had been half looking forward to the consult, if I’m honest, as I wanted to see the look on his face after having proven him wrong. But keeping up with the tradition, my cardiologist offered nothing more than disappointment. Instead of conveying empathy and charting a course forward for my health, he seized the opportunity to redeem his self-image.
He spent the first 10 minutes delivering a jargon-ridden monologue to prove that he was, in fact, intelligent. The final five minutes, we discussed medication. He told me none were confirmed safe for breastfeeding mothers, but that exercise and clean eating could be equally — if not more — effective. I felt reasonably confident, but then came the final slap in the face:
“Come back and see me in five years.”
Five years? A shiver went down my spine as I recalled the “16.6 per cent within five years” statistic I mentioned earlier.
A Symptom of a Broader Issue
While my cardiologist’s behaviour was jarring, it came as no surprise. Research shows that women all over the world experience invalidation and minimisation when seeking diagnostics and treatment for their health. It’s partly why women’s heart attacks are 50 per cent more likely to be misdiagnosed than men’s.
This medical misogyny claims lives.
Amy is now fit enough to run without pain but always carries a bottle of GTN spray just in case. Image: Supplied.
When women’s symptoms are not believed, their health care is often delayed and they are more likely to experience an adverse health outcome as a result. In my case, I am young too, which is likely a factor in my cardiologist’s lack of concern. But now imagine I am a young man instead, presenting in the same circumstances and ask yourself:
Would my persistence be seen as neuroticism or a healthy form of self-confidence?
Would my survival be treated as less important than my baby’s nutrition?
Would my diagnosis be minimised as if it were no more serious than a head cold?
Of course, I will never have concrete answers. But when I hear the countless anecdotes from other women with similar experiences, it doesn’t look good. Does it?
(P.S. Don’t worry, I now have a new cardiologist and he is amazing. My symptoms are under control and I’m now fit enough to run three times per week without pain.)
Amy Sarcevic is a freelance writer and author of children’s book ‘My First Meditation Guide’. Amy uses writing as a tool to promote health and wellbeing, diminish stigma, and call out unconscious bias.
