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The Many Years I Spent Doubting the Reality of My Condition

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In 30 years I had never heard of “mitral valve prolapse” or “inappropriate sinus tachycardia.” In fact, just the word “inappropriate” makes me feel rather ridiculous. In my teens I was in great shape. A lifetime of dance and cheerleading had kept me fairly fit, and I never really gave it much thought. I always had a history of another impossible-to-pronounce cardiology term: “premature ventricular contractions.” PVCs are just that feeling of your heart skipping a beat – and I knew they were harmless and normal, so I ignored them. I probably should have realized something was going on when it got to the point where those PVCs were starting to feel like getting kicked in the chest every time. But after one doctor my freshman year of college basically told me I was making stuff up, I never said another word for 12 years. However, over those 12 years what started out as a nuisance grew into a life-altering problem.

By the time I was 20 I had stopped dancing, cheering or generally doing anything physical. It seemed that even the slightest physical exertion sent my heart rate through the roof. Walking up a flight of stairs would leave me out of breath. Running to catch the train was like a near-death experience – I was doubled over, certain I was having a heart attack. But I didn’t say anything. Having been diagnosed with depression and anxiety, I thought it must all be a result of those. I must have been anxious about catching the train (or walking up the stairs?), and it caused my heart rate to shoot up. I had no reason to think that wasn’t true. And my anxiety wasn’t about to let me cause a fuss over the whole thing. So I ignored it. I called myself lazy and out of shape – so out of shape that I was too out of shape to even exercise. I blamed my “mental condition” for causing all of this drama. And every time it happened I hated myself more and more.

By the time I was 30 I had altered my life to work around what had become an impossible-to-ignore problem. I was always tired. Just walking downstairs to the car to go to the grocery store was tiring – forget about the process of actually pushing a basket full of stuff around, and then carrying it all upstairs and putting it away. One grocery trip would take several hours of pacing myself and would wipe me out for the rest of the day. I didn’t go out, I didn’t do things and I didn’t think there was anything wrong with that. Everything took considerable effort, and the more effort it took, the more I blamed myself.

A chance encounter with a very perceptive cardiologist is the only reason I now know about this at all. He noticed that my heart rate tends to jump when I go from sitting to standing. I didn’t know that was unusual, or that it meant anything. He knew, he noticed and he decided we should investigate. And after wearing some contraption he called an “event monitor” for a few weeks, I returned and got the surprise of my life. It’s called inappropriate sinus tachycardia, and it’s real. I promise, it is real.

It took some time to process, but I wake up now with a new mentality. I’m learning, slowly, how to live with this. I take beta blockers to help control my heart rate, but they come with side effects: fatigue, weight gain and the complete inability to hold my liquor. They also tend to stop working after a few weeks and require a dosage increase. But still, I’m learning how to live with it.  I will never be a professional cheerleader no matter how much work I put into it, because I simply can’t spend hours dancing. Sometimes I can’t even spend seconds dancing. Sometimes I can go to the grocery store, clean the house and have energy to spare. But sometimes just standing up and walking to the next room to get a pen to make a grocery list is enough to wear me out.

The hardest lesson may be learning to admit to my cardiologist when everything is not OK. Despite the fact that he is the one who told me something was wrong, I still hate the idea of “complaining” about it. I don’t want to admit when PVCs are keeping me awake at night, or when my heart rate has started skyrocketing again from walking into the kitchen for a cup of tea.

On a good day I can spend half an hour working out, run errands, go to work, go to sleep and feel about as close to normal as it gets. But on a bad day I get out of bed and I immediately know. There will be no exercise because after five to 10 seconds my heart rate will be climbing past 140 and my body will be shaking, and I will have to stop. There will be no sleep because my chest feels like it gets kicked at random intervals, and my heart seems to just take a break from beating every so often while I lie there wondering what the upper limit is of how much medication I can take to try to make it stop. A bad day is one full of dread, anxiety and exhaustion.

But when I have bad days, or weeks, I’ve learned to stop the self-hatred and look at the last appointment summary they sent me home with. I didn’t realize it for about a week afterwards, but it lists all these things right there under “you were diagnosed with…” It’s a reminder that it’s real, it’s not just something I’m making up. If the guy with the medical degree thinks it real enough to put on paper, who am I to argue?

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Thinkstock photo via Grandfailure.

Originally published: May 17, 2017
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