Untold stories of women's health

I recently had my PhD conferred and I thought I’d share some thoughts about my research.

My research was about women who have cardiac disease in pregnancy and the first year postpartum.  The women had a whole range of different congenital (born with it), genetic (have the genes for it) or new conditions, including Tetralogy of Fallot, rhythm disorders like long QT syndrome, cardiomyopathy and SCAD (spontaneous coronary artery dissection and heart attack). Some women were born with their heart condition, others were diagnosed in their teens, during pregnancy, in the first weeks or up to a year postpartum – so totally different scenarios.  (We didn’t include high blood pressure and pre-eclampsia).

You may not fit into any of those categories, but the key issue will likely still apply to you, so I encourage you to keep reading.

Hidden Struggles: A Void in Knowledge

There are only a couple of Australian research articles about women with cardiac disease in pregnancy and postpartum and not a whole lot internationally.

Which is, well, pretty wild. And appalling.

We don’t even know how many women are affected in Australia.  If you go by international estimates of 1-4% which there are roughly 3,000 to 12,000 women every year in Australia – that’s a lot even at the 1% end of the range.

Not knowing how many people have a condition, what treatment they had, the results of treatment and how their lives were affected, you can’t design clinical guidelines for health professionals, you don’t know how many specialist health professionals and services are needed to support women, you don’t have established referral networks (some informal referrals still happen, but it is luck of the draw where you live), you have limited support services, limited-to-no ongoing support, and so the women don’t get the clinical care and the support they need.  

Seeking Understanding: The Heart of My Research

My research was rooted in curiosity, not theory. Through interviews and surveys, I sought to uncover women’s stories and the path to improvement. When I interviewed and surveyed women, I had no preconceptions about what their responses might be.  Here is the single biggest issue I found.

DISMISSED

I interviewed 25 women and ALL of them said they were dismissed by their healthcare professionals at least once.  Some were dismissed multiple times. Some over months, some over years.  The consequences of being dismissed were serious – both from a heart point of view and from a mental health point of view.

And they weren’t only dismissed by one discipline or speciality area: it involved GPs, cardiologists, anaesthetists, O&Gs, emergency staff, RNs, midwives, ambos and physios. It was by males and females.

They were dismissed when they said they had chest pain and other heart symptoms, when they said they had pain even after treatment, when they told one specialist what the other specialist should happen, when they declined an intervention, when they wanted their children tested, when they wanted to know what they should do to support their health long-term, when they said they wanted more babies.  And more. It was heartbreaking and maddening. 

Unpacking the Dismissal

Why were they dismissed? Two top two reasons were misogyny and knowledge gaps. Bias against women’s health intersects with the complex world of cardiac issues, perpetuating disparities in care quality and outcomes.

Misogyny.

There is a long history of women being dismissed in healthcare. This bias may be conscious or otherwise. The research evidence for this is particularly strong when women have a) heart conditions, b) reproductive health issues, and c) pain.  The women I spoke with typically had all 3!  As an example, if a women and a man, same age, same medical history, go to the emergency dept with chest pain, he’s more likely to get an angiogram and she’s more likely to be asked if she has anxiety.  And if they are perchance diagnosed with the same condition, he is more likely to get treatment that follows clinical guidelines and she gets less treatment (e.g. not prescribed some of the drugs, doesn’t get a stent) and she is discharged sooner.  No surprise, women have worse outcomes for cardiac conditions.

There’s 6 bazillion more words I could add here but I will stop! 

Knowledge

If there isn’t the research, and sub-specialists (e.g. cardiologists and obstetric physicians who have a sub speciality of cardiac health in pregnancy and postpartum), and clinical guidelines, then there is a greater chance that healthcare professionals don’t have the knowledge or protocols/guidelines to help them. They can only work with what they have and they need more information and support too.

How is this relevant to you?

> Because it is about listening to your gut feelings.

> About finding your voice.

> And about standing your ground.

>> AND, about caring for yourself to the same level you would a loved one.

Women I spoke with talked about not calling an ambulance because someone else might be sicker and need the ambo more – you’ll never know and the dispatcher can work out who goes to the top of the list.  Oh, and these were women mid-heart attack.  They were really clear that they wanted future women to do things differently and to just call the ambulance. When you need it. Not after dropping the kids off to school, or putting them to bed.

Self advocacy: A place to start

Whether it is a heart worry, perimenopause (ugh, don’t get me started about women being dismissed with peri symptoms), endo, PCOS, PMS, anxiety, gut issues or whatever, get really interested in your symptoms. Don’t obsess obviously, but keep notes of things like:

• when is the symptom worst
• what seems to make it better or worse 
• when do you notice it? – After eating, before your period, walking up a hill etc
• what have you tried to reduce the symptom (and did it work)
• have you stopped doing some things you usually do because of it? – Like no longer being able to go for a run, or driving in the city, or eating out etc
• does anyone else in your family have anything similar (or had)
• if you had to rate it out of 10 with 1 being totally fine and 10 being absolutely terrible, how would you rate it when it is at it’s worst and also just as an average (that’s really hard to do but worth trying)
• how long you’ve had it
• when it started and/or when it got a lot worse
• how can you describe it in more detail – for example, if it is pain, is it dull or sharp constant or in waves, does it burn, or is is it weirdly painful and numb at the same time etc

Having this information will help when seeking healthcare. The onus for improving communication and assessment of your health complaint should be on the healthcare professional. In reality though, we need to self-advocate as patients (and yes, both sides of this apply to me as patient and as healthcare professional).

Your Worth: A Final Thought

Remember this: You are deserving of care and support. Your health and wellbeing matters. Embrace it with the confidence that you hold the power to create a change, not just for yourself but for the countless women walking beside you and the women and girls who will follow you.

YOU ARE WORTHY OF CARE AND SUPPORT