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Living With Heart Disease Can Be Hard to Open Up About

I have felt discouraged in talking about my heart condition and sometimes even writing about my journey. Now and then, I have felt unmotivated, but recently, the lack of motivation lasted much longer than usual.

Why should I bother?

Talking about living with heart disease is not easy, primarily because of the judgment associated with the news and patients (predominantly black patients). It is true that I am mortal and that I have a condition that has no cure, but I am not dying. It also doesn't help that I look healthy (healthier than most) and honest on the outside.

I often wonder why I should bother telling anyone about the ins and outs of living with heart disease or hanging on to life by an LVAD. Perhaps no one needs to know about all the trade-offs, the sacrifices, the canceled plans, postponed dreams, or the countless restrictions that come with maintaining a good quality of life.

I chose to keep quiet

Here's an example that comes to mind: one Saturday afternoon in the late fall, my wife moved things around the house, like she loves to do (topic for another day). This involved moving a few items in and out of the basement. At one point, she was carrying the mobile AC system downstairs. It is then that our back neighbor, Dave, an older man who is probably in his late 60s, came to see the scene.

Upon seeing Desi carrying the AC and me standing by, he first gave me a wondering look. Then without asking any details, he exclaimed, "Why is she carrying this AC? How do you let her take this?" I thought of explaining the situation to him, but before I could utter my first word to reply, he gave himself a facepalm and started to shake his head. I laughed and turned to my wife, and I jokingly told her, "This man is looking out for you."

Then, I thought to myself, "Isn't it sad that I always have to explain? Why is heart disease so invisible and unknown? How much extra energy do I need to keep doing so?" Perhaps if I had described what was going on, he probably would have understood better or even offered to carry the stuff for me. However, I didn't have the energy at the time, so I chose to keep quiet.

That is alright

Living with heart disease can often get frustrating because of all the physical and mental limitations. The mental pressure is particularly challenging because one may not be able to do most activities. This can make one feel like a burden.
Thankfully, I don't have the bug of toxic masculinity, nor am I susceptible to peer pressure. So, when I am in a normal state of mind, I talk and gladly educate people about the different precautions I must follow. For example, I would have explained that I did not carry the AC because I was already tired, and I must not overexert myself, but sometimes, I don't feel like sharing. And that is alright.

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