What No One Tells Black Women About Heart Disease

I thought I was having an asthma attack when I visited my primary care physician in May 2019. By the time I left that appointment, I’d been referred to a cardiologist to have an echocardiogram (or heart ultrasound) to figure out exactly what was happening. Within two weeks, I’d been diagnosed with cardiomyopathy — better known as heart failure — put on a strict sodium and liquid restriction, and prescribed a cocktail of medications designed to both slow my heart down and make it beat more normally. By the time I was diagnosed, my ejection fraction (EF) — the amount of blood the left ventricle pumps with each contraction — was 16%; an ordinary EF is between 50% and 70%, according to the American Heart Association (AHA). I was 29.

I knew I’d been more short winded than usual, but I’d attributed it to anxiety and lack of consistent physical activity. I was also more tired than I’d ever been, but I thought it was due to juggling a full-time job, two book deadlines, and an iron deficiency. Had a doctor not considered a holistic picture of my symptoms, I likely would’ve died.

That’s seemingly the case for a generation of Black women being diagnosed with heart diseases in their twenties through forties. In a 2019 article published in Circulation, a journal of the American Heart Association, researchers Jolaade Kalinowski, Jacquelyn Y. Taylor, and Tanya M. Spruill, note that young and middle-aged Black women have “cardiovascular disease (CVD) risk factors, develop CVD earlier, and have higher CVD mortality rates.” The AHA has long acknowledged these disparities, noting that 49% of Black women over the age of 20 have heart diseases and that CVD kills nearly 50,000 Black women every year. Many of us have grandparents, parents, and aunties who’ve died from a heart-related condition or disease, but what do we make of these cardiovascular diseases and conditions coming for us at much earlier ages?

“There are genetic, environmental, and biological issues at play,” Kalinowski says. She notes that most health disparities are driven by social factors, including neighborhood stress, occupational stress, financial strain, and caregiving and parenting stress, which are all compounded by racial and gender discrimination. Black women, in particular, are often the matriarchs of their families, and their communities face systemic barriers to health care and higher-paying employment. It’s also difficult for some Black women to access fresh foods because they live in food deserts and their communities may not have gyms or other places to engage in physical activity. All of these factors take a toll over time, making us more susceptible to developing cardiovascular diseases.

Vanessa Taylor, 48, certainly believes that stress contributed to her developing tachycardia-induced cardiomyopathy and systolic congestive heart failure at the age of 44. “When I was younger, I was very career driven,” Taylor says. “I had to work harder because I was a Black woman in a predominantly White organization. I wasn’t allowing myself time to decompress and effectively manage my stress.”

She’d been feeling fatigued for between six and eight months before her diagnosis in 2016, but she assumed she was tired from working as a director at a nonprofit organization. “I couldn’t do a load of laundry without feeling like I needed to take a nap,” Taylor says. She didn’t go to the hospital until she began having unbearable stomach pains and chest discomfort and had lost her ability to form coherent thoughts and words. “I would want to say pillow and I would say towel. Doctors said that had something to do with the lack of oxygen to my brain,” she says. Taylor was immediately hospitalized and underwent an emergency cardiac ablation, a procedure that prevents the heart from, according to the Mayo Clinic, “sending the incorrect electrical signals that cause an abnormal heart rhythm.” Taylor’s doctors discovered that her heart was beating 24,000 extra beats per day.

Within 30 days of having the cardiac ablation, Taylor was able to return to work with sodium restrictions, a medicine regimen, and a requirement to exercise 30 minutes every day. Though she says she feels as if the treatment plan is working, Taylor described the overall experience as “mind-blowing.” Unfortunately, Taylor’s experience — coming to the hospital for something routine and leaving with a heart diagnosis — is common because doctors have very little research to guide their interactions with young Black women who are exhausted, have fluid pooling in their legs and ankles, and are feeling more fatigued than usual. “There’s also an overlooking or dismissiveness about potential diagnoses,” Kalinowski says. “Providers might be thinking, you’re 32 years old, there’s no way you can be having symptoms that afflict someone who’s 50.”

Some of that dismissiveness stems from racial bias in medicine, which greatly impacts Black people of all ages and genders and impacts our ability to be properly diagnosed and treated for our ailments. Some of it can also be attributed to the fact that women with cardiovascular issues have different symptoms than men. Rather than having sudden chest pains, Kalinowski notes that women may have subtle symptoms that may not appear to be as particularly serious, including nausea, shoulder pain, dizziness, and extreme fatigue.

Tanya Boucicaut, an assistant professor at Virginia Commonwealth University, didn’t have the standard symptoms when she went to visit a doctor in February 2019. She simply thought she had a recurring bout of bronchitis. After she checked into a clinic in Virginia Beach, she had an X-ray done and with one sentence, a doctor upended her life: “You have a cold, and by the way, your heart is enlarged.” Though Boucicaut didn’t know much about cardiomegaly, a condition that can progress into congestive heart failure, she knew that it hadn’t developed overnight. When she asked to see a previous X-ray for bronchitis, she realized that she’d had an enlarged heart for at least four months. “In hindsight, I was tired. I kept thinking, ‘I’m really out of shape,’” she says. “At the building where I used to work, the parking garage was only a block away, but the walk made me feel so tired.” Boucicaut, who was 31 at the time of her diagnosis, assumed anxiety was causing her shortness of breath and she thought anemia was causing that unshakeable feeling of tiredness. An enlarged heart wasn’t at all on her radar.

When it comes to recognizing risk factors for cardiovascular diseases, Kalinowski says it’s important for young Black women to know about “Life’s Simple 7,” AHA’s recommendation for key lifestyle modifications that contribute to ideal cardiovascular health. The AHA says that people who stop smoking, eat better, become more active, lose weight, manage blood pressure, control cholesterol, and reduce blood sugar lower their chances of getting a cardiovascular disease, but that’s easier said than done. “Behavior change is very difficult, even for people who are well-resourced and very well-supported,” Kalinowski says.

Black doctors and researchers, particularly Black women doctors and researchers, are crucial in the fight to address those structural concerns. When Boucicaut was diagnosed in 2019, she insisted on finding a Black cardiologist because she wanted a doctor who would know how different medicines interact with Black people’s bodies. A 2010 study from the American College of Cardiology found that only 3% of practicing cardiologists in the United States are Black. Having a Black doctor increased Boucicaut’s confidence in her treatment plan. “The doctor said he’d treated many people my age — mainly Black men — who had the same heart condition,” she says. “That gave me comfort.” Kalinowski shared a similar sentiment. “It is extremely crucial… to increase the pipeline of Black women and men who are addressing these issues,” she says. “We need to continue to invest in the diversity of researchers and providers who are researching these issues and committed to seeing these data turn.”

While we wait for that pipeline to become more inclusive, young Black women can still preserve their health. Boucicaut recommends asking for an EKG during your annual physical, exercising with a trainer that focuses on heart health, and paying attention to how your body feels. “Black women are so busy, so accomplished, and we do so much, but your heart isn’t something you can push back,” she says. “When I’m tired, I have to rest. When I do too much, I can almost feel my heart in my chest, and I don’t like that feeling. I want to be here.” Similarly, Taylor, who retired in October 2019, says that Black women have to manage their stress, no matter how old they are.

For those who have already been diagnosed with a cardiovascular disease, it’s important to know you aren’t alone. Taylor joined a Facebook group for women with cardiomyopathy and another support group for people with congestive heart failure. Both have been helpful as she’s navigated depression and feelings of isolation and loneliness. Boucicaut’s advice should stick with those who’ve been diagnosed and those who soon will be. “Your life isn’t over after a diagnosis. If you need to call someone, call them. If you want to eat a cookie, eat a cookie. Just take care of yourself.”