What Having Heart Disease Has Taught Me

I’m often asked what it’s like to live with heart disease. For me, the physical limitations have been much less difficult to manage than the emotional and psychological ones. Heart patients are cautioned about becoming “cardiac cripples”—overly anxious and worried about their future to the point that it affects their health.  Yep, I’ve done that.

Like most people living with a chronic illness, I teeter somewhere between complete denial and painful reality. One minute I can’t stomach thinking about the tests, medicines, hospital visits, and so on, and the next I research compulsively on the Internet how to get an appointment at the Mayo Clinic.

Heart disease has been part of my life for as long as I can remember. There were suspicions that my fainting spells as early as age eight were related to my maternal grandfather’s sudden cardiac death while brushing his teeth one morning. But it was the 1960s and heart disease was thought of as something that afflicted men—nothing of concern for women, much less little girls with pigtails.

By the time I was in college, my symptoms—dizziness, palpitations, shortness of breath—were common. I tried to ignore or wish them away, but I knew in my gut that something wasn’t right.

One day I was forced to face the truth.

It was a muggy day in Washington, D.C., and I was riding the subway to meet a guy after work. I remember looking at my watch and seeing that I was running late. Out of nowhere, I felt sharp pains and horrible palpitations. It felt like a horse kicking the inside of my chest. Then like a butcher pounding meat.

I started to panic.

There was no rhythm to the beats. They hit as randomly as tennis shoes in a dryer. Looking down, I saw the buttons on my blouse jiggling in sync with the beats. I coughed, held my breath, leaned over, stood up. Nothing helped. I was paralyzed with fear and trapped underground.

I dropped my newspaper and looked around at the total strangers, workers heading home from their jobs on Capitol Hill. Feeling faint, I inched off the subway seat onto the floor. One guy reached out his hand to help me, but I shooed him away.

“I’m trying to find my glasses,” I said, and faked a smile.

When people ask me what living with heart disease has taught me, it’s this: Kick the voices in your head to the curb and live each day with fresh eyes to the very best of your ability.At the next stop I stumbled out of the subway and took a cab to the ER, where they told me I’d had a heart attack, then retracted the diagnosis after I explained my family history and bouts of fainting spells. I was discharged at 4 a.m. and admonished to “see a cardiologist as soon as possible.” The next week I would be diagnosed with hypertrophic cardiomyopathy—a rare, inherited heart condition most often associated with sudden death in young athletes.

In a dull voice, the doctor told me what to expect: shortened life expectancy, two or three medications, probably no children, limits on physical activities, abnormal heartbeats, and yes, a high risk of sudden death if my heart gyrates to the point that it stops. It was a lot to take in, but I didn’t start crying until he left.

Fast forward 25 years, and most of these physical limitations never happened.

That’s the good news.

As I approach 60 and start a new career that keeps me traveling around the world, I realize with great satisfaction that I’m living a much bigger and better life than I ever imagined. And having heart disease is part of it.But my identity, my sense of myself as a “heart patient,” has done damage. I let it distort my body image, sexual performance, exercise capacity, partner appeal, diet choices, sleeping patterns, desire to have children, and even my ability to manage money. Why save for the future when there might not be one?

When people ask me what living with heart disease has taught me, it’s this: Kick the voices in your head to the curb and live each day with fresh eyes to the very best of your ability. Your path in life is unlike anyone else’s, even those who wear the label “heart patient.” We all live with labels, and it doesn’t do any good to pile on top of them your own limiting beliefs and preconceived ideas about what they mean. It keeps you from living the life you were intended to live.

As I approach 60 and start a new career that keeps me traveling around the world, I realize with great satisfaction that I’m living a much bigger and better life than I ever imagined. And having heart disease is part of it.

For more information on heart disease and women, go towww.womenheart.org or www.hearttruth.gov. For more information on the signs and symptoms of hypertrophic cardiomyopathy, go to www.4hcm.org

(First published on www.rewireme.com)

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