At 22, I was a graduate student at Emory University training to become a physician assistant—seemingly the last place where I should have ignored warning signs from my own heart.
Yet that is exactly what I did.
The EKG I performed on myself was abnormal, which should not have surprised me. I had frequently fainted as a teenager, became breathless while shopping at the mall and could not run a mile without feeling as though my body was protesting.
I understood enough about cardiology to know that these symptoms were not normal.
But at 22, I also believed that nothing truly serious could happen to me.
So I chose to ignore the signs.
As a young woman, I found it easy to minimize my palpitations, chest discomfort and occasional dizziness. The symptoms never seemed severe enough to stop me, so I convinced myself they were “not that bad.”
Eventually, I had to admit that I had been fooling myself.
Gwen Mayes says she spent her early 20s denying symptoms that could ultimately have proved fatal
By her early 30s, however, she could no longer turn away from the truth
Denial is a familiar—and often overused—way of coping when we cannot make sense of what is happening inside our bodies. It is easy to view denial as weakness or irresponsibility, but sometimes it is simply the mind’s way of saying, “I cannot deal with this today. Maybe tomorrow.”
My tomorrow came nearly a decade later—and it almost came too late.
I was taking the Metro in Washington, DC, to meet a man after work when my heart suddenly began pounding violently. It did not happen once or twice; the episode continued for roughly 20 minutes. Panicked, I realized I had ignored the warning signs for far too long.
It was the most frightening experience of my life. I was shaking, sweating and suddenly pale, struggling to breathe. I bent over to catch my breath, then crawled beneath a seat to escape the commuters who were trying to help. My heart continued to pound with the force of a bass drum.
Terrified, I abandoned the date and went to the nearest emergency room.
At first, no one appeared convinced that anything serious was happening. Maybe I was overworked. Perhaps it was a panic attack—or maybe, as I feared, it was all in my head.
Then an EKG showed that I had suffered a heart attack.
The definitive diagnosis came the following week: hypertrophic cardiomyopathy, a genetic condition that causes the heart muscle to become abnormally thick. It can trigger irregular heartbeats, unexpected fainting and powerful thuds that feel like a horse kicking from inside the chest.
Suddenly, the future I had taken for granted became uncertain. Overnight, I was classified as a heart patient—even though I was still wearing three-inch heels and pencil-tight skirts.
My cardiologist told me that I had a shortened life expectancy.
‘How long do I have?’ I asked.
He didn’t know. No one knew. The condition at the time was considered terminal, permanent, with no room for negotiation.
I would need regular check-ups. I would need medications, maybe surgery. My condition might worsen. It might not. Having children was risky.
One thing he said took hold: ‘This may cause you more problems psychological than physical.’
As a child, Mayes (pictured age three, left, and eight, right) became short of breath easily and could barely run a mile
‘I had fainted a lot in my teens,’ says Mayes. ‘I became short of breath shopping at the mall’ (pictured age 14)
Bingo. He was right.
For nearly 20 years, I kept my heart disease largely to myself. Telling others made it more real than I could handle and I suffered alone.
There were no patient support groups at the time. There was no Instagram community of women sharing their diagnoses and comparing notes. There was no hashtag for finding your heart sisters at 2am when you were convinced something was terribly wrong.
There was mostly silence.
And the silence led to anxiety, depression and feeling like an outcast, damaged goods, bereft with knowing what I had hoped to become in life was no longer in the cards.
For years, I allowed my diagnosis to take up more space in my life than it needed. Every flight of stairs looked like a mountain. Every skipped heartbeat interrupted my thinking. Every bout of breathlessness became a negotiation between my rational brain and the frightened woman living inside my chest.
Approximately 160 million Americans live with at least one chronic health condition and most of those are invisible. I’m one of them. The strange thing about chronic illness is that you can be both sick and look perfectly well at the same time.
I could go to work. Travel. Party with friends. I could look completely healthy.
And at the same time, I could be thinking: ‘Is my heart acting up? Did I miss my meds? Should I be worried? Can anyone tell I’m not right?’
Eventually I realized that living with a chronic disease wasn’t going to be a single dramatic battle that I would win or lose.
It wasn’t a one-night stand. It was going to be a long-term relationship. It was part of me that needed my attention, with compassion and care, not ignored with frustration and regret. I had to make friends with my heart.
And, like many long-term relationships, it required boundaries. It required weathering ups and downs that came in the form of good days, bad days, taking turns yet unannounced.
The only way to keep your wits about yourself is to learn as much as you can about your body’s quirks, missteps, weird behaviors and discern what’s you being you and you being on the brink of something that needs medical attention.
‘For years, I allowed my diagnosis to take up more space in my life than it needed’
As Mayes hit middle age and lived much longer than expected, she became more interested in what was still possible (pictured with her partner, Dr Les Erickson)
It takes diligence and quashing the urge to throw a pity party.
I learned the hard way that to keep my physical health in working order, I had to get a grip on my emotional and mental health.
That’s the lesson your doctor never tells you: your emotional health is equally important in determining your physical health. Your attitude, lens on life, temperament, and curiosity will help you manage our confusing and irrational health system and keep you on track.
No one tells you that the glue to feeling you’re keeping it together is your ability to manage your emotions. But I will.
Over the years, I’ve moved, changed jobs, seen 20 different cardiologists and accumulated enough medical records to fill a small filing cabinet. Electronic medical records have improved enormously, but healthcare isn’t one giant, beautifully synchronized computer system in which every clinician knows everything that has ever happened to you.
Somewhere along the way, I stopped measuring my life against the life I thought I would have. I stopped expecting more of myself than could possibly be.
That may have been the biggest turning point of all because I saw possibilities to live fully instead of playing it small. I had spent years thinking about what heart disease might keep me from doing. As I hit middle age and lived much longer than expected, I became more interested in what was still possible.
And there were plenty.
I took up Pilates.
I traveled.
I fell in love with people and places.
I built a career around health policy and walked through the halls of Congress advocating for better healthcare.
In other words, I lived. Not despite having heart disease. I lived with it.
For a long time, I thought it meant that I was throwing in the towel.
Now I understand it differently.
Acceptance isn’t saying: ‘This is all my life will ever be.’ It is saying: ‘This is part of my life. Now what am I going to do with the rest of it?’
Doctors seldom ask about your mental well-being or how you’re handling your emotions. But they should – and if they don’t, feel free to add it to the discussion.
Hopefully, you’ll find your mind and body heal together.
More Person Than Patient by Gwen Mayes is published by Mayo Clinic Press, November 3.
