by Carolyn Thomas ♥ @HeartSisters
Last week, we learned here about a young Florida woman who arrived at her local Emergency Department with nausea, vomiting and “heartburn” – as described by Emergency physician Dr. Sam Ghali in the post called “I’ll Give You a Hint: the Diagnosis is NOT Heartburn or Anxiety”. He challenged his professional colleagues on Twitter, asking how they would have diagnosed this patient based on her distinctive ECG test results. Some of their guesses at interpreting the results missed her obvious heart attack, so Dr. Ghali reminded these healthcare professionals:
“Remember this case and never ever write off people with chest pain – especially women who may present differently than men and are notoriously misdiagnosed or diagnosed late with worse outcomes. Please help spread awareness, and I promise you will make a difference in these people’s lives.”
Dr. Lea Merone from Australia was one of the healthcare professionals to weigh in on Dr. Ghali’s Twitter challenge – but with an unusual response. .
She wrote:
“The responses to this Tweet are why I did my PhD in women’s chronic disease!”
Her research, called “I Just Want to Feel Safe Going to a Doctor”, published in the journal Women’s Health Reports.1 And her response to Dr. Ghali’s ECG challenge was the result of her belief that medical research – including most cardiac research – has historically been androcentric, from the Latin andro (“male, man”) and centric (“centred on”).
What this means is a tendency to place the male or masculine viewpoint and experience at the centre of a society or culture. For example, most medical research has been performed on the bodies of your average (white, middle-aged) males – and then generalized after the fact to apply to female bodies as well – as if researchers believe that what works for men will work for women, who – after all – are just small men, right?
Emergency physician Dr. Alyson McGregor would immediately object, as she does in her book, Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What We Can Do About It:
“We have our own anatomy and physiology that deserves to be studied. One of the biggest and most flawed assumptions in medicine is: if it makes sense in a male body, it must make sense in a female one, too. But in every aspect, our current medical model is based on, tailored to, and evaluated according to male models and standards.”
“Women are different from men in every way, from their DNA on up. Women’s blood vessels surrounding the heart are smaller in women than men. The way those blood vessels develop disease is different than in men. And the diagnostic tests we use to determine a heart attack were designed and tested and perfected in men – and aren’t as good as determining that in women.”
But even in initial animal studies, research performed on lab animals has been done on male animals.
Dr. Merone studied Australian women living with a range of chronic illnesses, and reported four central themes:
- diagnostic difficulties
- wide spectrum of health care experiences
- understanding medical complexity
- coping with distressing symptoms
The conclusions were grim:
“”Women with chronic conditions report pain, fatigue and suffering that significantly impacts upon their daily lives. There was a shared experience of feeling that the suffering of women was being dismissed or not taken seriously. Many women with chronic illness expressed traumatic experiences in health care, and often this led to a fear of accessing health services.
“The participants highlighted a need for more knowledge, understanding and empathy from healthcare professionals.”
But Dr. Merone goes even one step further. This disturbing gender gap, she suggests, also translates into a gap in medical education in which, outside of reproductive and sexual health, both medical/nursing schools and clinical textbooks frequently omit women entirely.
Focus on the latter has been called the ‘bikini approach’ to women’s health – in which women’s health research focuses heavily on breasts and the reproductive system – the parts of a female body typically covered by a bikini. As Dr. Merone explains:
“The androcentric history of medicine and medical research has led to an ongoing sex and gender gap in both health research and education. There is evidence to suggest that globally, this sex and gender gap in health research is ongoing. These gaps translate into real-life health inequities for women.”
Consider that Dr. Janine Austin Clayton, Associate Director for Women’s Health Research at the National Institutes of Health in the U.S., confirmed those real-life health inequities when she told a New York Times interviewer: “We literally know less about every aspect of female biology compared to male biology.”
So it’s ironic that Dr. McGregor even needs to remind her colleagues:
“Women are NOT just men with boobs and tubes.”
Women’s Health Reports. Dec 2022.1016-1028.
♥
Q: Reducing the gender gap in cardiology: where do we start?
See also:
– Dr. Sam Ghali’s ECG mentioned in the post called “I’ll Give You a Hint: the Diagnosis is NOT Heartburn or Anxiety”
–More about Dr. McGregor’s work here: Modern medicine is male-centric medicine, and that’s a problem for women.
– Cardiac research and the mystery of the missing facts
Before my heart issues, I suffered for 2 years with increasingly debilitating and misdiagnosed osteoarthritis in my hip due to a misread initial x-ray.
The 24/7 pain drove me to seek more potent medication and every possible treatment. I could hardly breathe sometimes. I became depressed, terrified of compounding my problems with addiction. I was impossible to live with.
But truly, the worst part was being dismissed by various medical professionals. That feeling of being “less” worthy and not believed. It was a female anesthesiologist in a pain management program that finally ordered a second set of x-rays on the whole lower pelvic area to diagnose (with disgust at her fellow medical practitioners) the severity of the osteoarthritis.
Earlier diagnosis wouldn’t have changed the outcome but could have altered the treatment path and, more importantly, my mental health.
A month after surgery, and now the first spring of COVID, the symptoms of heart problems began. I was in denial that something bad was happening again (still recovering from hip replacement) and also wary of the E.R.
Doctors closed their doors. Awful time to be major sick as we have all lived through. I finally ventured out to a mostly empty E.R. to be diagnosed with – wait for it – asthma. And sent home.
Over the next two months, worsening symptoms, anxiety both personal and over the state of the world. Finally I had my husband leave me at the E.R. so sick, I almost couldn’t move. Symptoms that were not male heart attack typical, but women know them.
I thought I had pneumonia, severe bronchitis, COVID but a kindly female doctor told me I had atrial fibrillation and fluid in the lungs and a cardiac cough from heart problems.
The shock, the relief to have a diagnosis, to not have COVID. But what now?
From that initial E.R. visit to diagnosis: 4 months.
First meds, hooked up with a “phone only” cardiologist, further testing. Time to angioplasty, 1 stent: 3.5 months.
I discovered your blog, read your book. The anger set in. I had to pursue my male cardiologist for a signature for cardiac rehab. Finally started 4.5 months after stenting.
My supervisor asked why I had waited so long. I told her. I felt vindicated with her look of disgust. We were 6 patients in that rehab, me, a young woman with SCAD and four men. The men had all had their heart events within the 2 months prior to cardiac rehab.
Your post this week hit such a vulnerable spot.
Six months ago, my white male 55 year old cousin was taken protestingly to the E.R. with symptoms, diagnosed immediately with a heart attack and stented.
Him: 24 hours.
Me: 7.5 months.
I am so thankful to live in a time of increasing awareness and anger about the treatment of women’s health, and grateful to those who are sounding the alarm, spreading the news and doing what they can to put women on equal footing as men.
We are also responsible for educating and empowering the next generation, both female and male, to value and protect women’s health beyond their reproductive usefulness.
Thank you Carolyn for doing your part. Your advocacy has made a warrior out of me.
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Oh Hélène! Your story makes me feel sick. I’m so sorry you had to endure that suffering for so long. Especially when contrasted with the experience of your cousin’s comparable heart attack and stent implant. 24 hours compared with 7.5 months?!?!?!? That’s appalling!
I just attended (virtually) a big conference on women’s heart disease. The cardiologists and researchers who spoke pointed out the huge disparities in research, diagnosis, treatment and outcomes in female heart patients compared to our male counterparts (as if we didn’t already know that!) and were also optimistic about how their studies might improve the quality of care. The audience applauded enthusiastically and congratulated their colleagues on their wonderful studies. But the really compelling speakers were the 15 heart patients over two days who told their stories – each one an appalling nightmare of being dismissed or misdiagnosed. The problem, I decided later, was that these speakers were preaching to the choir. Any physician who takes two days away from work and family to attend a conference on women’s heart disease is already a person with a keen interest in closing that gender gap.
But how are conferences like these reaching the doctors out there like the ones you had for so long? I feel defeated sometimes by the sheer scale of this ongoing gap (more like a chasm).
I hope that by now you are getting better treatment and managing a bit better each day. Thank you for sharing your experience with us, and please take good care of your precious self.♥
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Thanks Carolyn for your kind words. In darker moments, I wonder what the delays have done to my heart and other body parts, but don’t spend too much time there. The times of Covid were frightening for so many of us facing major health challenges, confronting lockdowns, health care restrictions, and the virus itself before vaccines. In that sense, yes, the timing was unlucky, on top of the unequal access.
I am stable today, and doing everything I can to stay that way. I am back to traveling the world, and enjoying my precious 5 month old grandson. I’m truly blessed.
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I’m so relieved that you’re stable after what you’ve been through, and finding joy in travel and especially your little grandchild. When my first grandbaby Everly Rose was born, one of my readers wrote to me: “This precious child will do more good for your heart than anything your cardiologist could prescribe!” (and she was right!!!) ♥
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Thank goodness we started to see and act on the difference.
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Yes- finally! 🙂
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