I was 22 years old in graduate school, studying to become a physician assistant at Emory University, which seems exactly the wrong place to bury your head in the sand about your own heart.
But that is precisely what I did.
The EKG I ran on myself was abnormal. No surprise. I had fainted a lot in my teens. I became short of breath shopping at the mall. I couldn’t run a mile without feeling as though my body had filed a formal complaint.
I knew enough about cardiology to know these things weren’t normal.
I also believed at 22 that nothing terrible could happen to me.
So I ignored it.
As a young woman, it was easy for me to dismiss my palpitations, chest discomfort and occasional dizzy spell as ‘not that bad’ because they never seemed to slow me down.
In time, I realized I was fooling myself.
Gwen Mayes admits that she lied to herself throughout her early 20s about the symptoms that could kill her
However, in her early 30s, she could no longer ignore the truth
You see, denial is a handy, overused coping mechanism we all use when we cannot make sense of what is happening to our body. We tend to think of it as weakness or irresponsibility, but sometimes it’s simply the mind’s way of saying: ‘I can’t deal with this today. Maybe tomorrow.’
My tomorrow arrived nearly ten years later. And it was almost too late.
I was riding the Metro in Washington, DC, to meet a guy after work when my heart suddenly went ka-boom. Not once or twice, but consistently for about 20 minutes. I panicked, knowing I’d pushed aside the red flags too long.
It was the scariest thing I’d ever experienced. Shaking, sweating, suddenly pale and unable to breathe, I bent over to catch my breath. I crawled under the seat to get away from the commuters trying to help. My heart pounded louder, with the intensity of a bass drum.
Terrified, I skipped my date and went to the nearest ER.
At first, no one seemed convinced that anything was seriously wrong. Perhaps I was overworked, having a panic attack, or it was all in my head.
But an EKG revealed that I had suffered a heart attack.
The next week the real diagnosis came. Hypertrophic cardiomyopathy, a genetic condition in which the heart muscle becomes abnormally thick, causing irregular heartbeats, unannounced fainting and thumps that feel like a horse kicking the inside of your chest.
Suddenly, the future I had assumed was mine became a question mark. Overnight I was labeled a heart patient, despite wearing three-inch heels and pencil-tight skirts.
The cardiologist said I would have 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.
