Surviving a heart attack and a stroke can be one of the most life-altering and traumatic experiences in anyone’s life. For ShantaQuilette Carter-Williams, it was an experience that she uses as inspiration to motivate other Black women to be the “CEOs of their bodies.”
The nationally recognized heart-health advocate didn’t feel her voice was heard in the emergency rooms she visited when expressing her painful symptoms.
“I was tired of hearing that nothing was wrong,” she recalled. “My diagnosis was delayed, and the thought of dying scared me.”
Her story is quite common among people of color and women.
According to the Centers for Disease Control and Prevention, strokes are the fifth leading cause of death and the leading cause of long-term disability in the US, and it remains higher among Black American adults compared to whites.
Carter-Williams had an active lifestyle, although she experienced nausea, palpitations, and stomach pains that she often attributed to the flu and other ailments. Not only did it impact her physically, but she also experienced neurological issues. It was something she never saw coming, and it wasn’t until Carter-Williams finally faced her mortality that she decided to course correct and make drastic changes to live a longer, healthier life.
In honor of National Stroke Awareness Month, the Defender spoke to Carter-Williams about the message to protect other Black women from heart disease and stroke.
Defender: How were your health and wellness habits before your stroke?
Carter: I had a heart attack nine months before my stroke. My health fluctuated. I was told (by doctors) that my heart attack resulted from stress. I had a very high-paced, demanding job in tax collections. I also have a non-profit called the Pink Peppermint Project that caters to metastatic breast cancer patients and caregivers. I lived a high-paced life.
After I had the heart attack, my doctors told me I needed to minimize some things I was doing. I had issues like chest pains and palpitations, and I’d been going back and forth to the doctor for maybe around 12 years complaining about my symptoms, but it was being dismissed. I didn’t get an invasive or non-invasive test outside of an EKG to determine what was happening to me.
I was told I had exercise-induced arrhythmia, meaning when my heart rate reached a certain level, the palpitations were more apparent. I was very active in the gym and did everything like a healthy person in good shape would. Once I got diagnosed, I didn’t go to the gym as much. I was afraid. My body stopped moving, but my mouth didn’t, so I gained weight.
Defender: Do you remember what led to the stroke and the actions taken afterward?
Carter: After my heart attack, my job made a reasonable accommodation, and they removed some of my work duties. That didn’t eliminate any of the symptoms. I started having migraines, cluster headaches, and dizzy spells and noticed I was making slight mistakes at work. I went to a neurologist and a cardiologist. My blood pressure was high, and the doctors still suggested it was due to my stress. My husband was angry and wanted them to check whether I had lupus because my uncle had lupus, or other ailment passed down in the family. I was diagnosed with Fibromyalgia when I was 19. That was the only thing I had. I eventually saw a pulmonologist and noticed my legs were swollen and suggested I take water pills and a sleep apnea test.
Fast forward, I went to work because I was in the clear. The doctor told me to keep monitoring my health. I was laughing and talking with my neighbors in the cubical until I had a sharp headache and got dizzy, and I remember trying to speak but couldn’t say anything. I felt paralyzed. I eventually collapsed. A doctor and nurse were on duty at the office, and they saw I was unresponsive; I was gurgling and had a droopy face. I was immediately taken to Baylor. Eventually, I was admitted into rehabilitation for the next two years for physical, occupational, speech, and cognitive behavioral therapy. I went to a hematologist and found out my LDL levels (cholesterol) were extremely high, and later found out it was passed down hereditarily by my dad, and I didn’t even know it. My initial diagnosis was multiple sclerosis until a neurologist told me I had a stroke.
Defender: You had quite a challenging experience with healthcare professionals during this time.
Carter: Being Black and a woman comes with its own unique challenges. It’s tough to talk to a doctor because I feel like, culturally, doctors don’t understand your struggles, especially if they’re not Black. They tell me I’m doing too much or overworking myself and must quit my job. It’s easier said than done when you have a family to care for. And I had a good government job. The doctors were more focused on that rather than the symptoms I kept telling them I was suffering from. The experience was debilitating, frustrating, and saddening.
I felt like my voice wasn’t being heard. It’s hard when you feel like the person diagnosing you is smarter than you. So, you feel like you can’t defend yourself before they have to remind you about their title as a medical professional. I feel like doctors have unconscious biases. Health care should be universal. Everyone should be treated fairly. If you don’t have the financial means, you can’t get the proper access to care. Bad hospital service can kill you. There is no room for mistakes. That alone creates stress and natural wear and tear on your body.
Defender: What lifestyle changes have you made thus far?
Carter: I had to do a whole 180. I still have heart issues. It’s not that I recovered. I’m mitigating it. I’m taking care of myself to the point where I don’t have another heart attack or stroke. I take medications, go to my doctor’s appointments, and be proactive with my health. I’m trying to eliminate stress by being able to educate others so they don’t end up like I did. I often try to say ‘no’ and keep my environment positive. My stroke affected me cognitively, even though it was four years ago. Mediation, prayer, and family members keep me accountable.
Defender: How do you choose to keep the conversations around stroke and heart disease in our communities going?
Carter: Having conversations with the Defender is one way. I’m an ambassador for the American Heart Association, Novartis, and now the CDC. Keeping those conversations open and being transparent is critical. I’m also a standup comedian. My comedy is about me, my life, and how I’m managing the stress of motherhood, being a stroke and heart attack survivor, and relaying that through my social media content. I’m also in partnership with CVS, and they’re working on huge women’s health initiatives. I want to make sure Black women are being proactive.
Defender: What lessons have you learned about yourself throughout this process?
Carter: I am the owner and CEO of my body. The doctors work for me. I have a voice. I should be able to tell the doctors what I should expect from them. If that doctor isn’t good, I can always find another one. I tell people not to be afraid to speak up. I always tell my doctor to treat me how you would want to be treated if you were dealing with a severe illness.
