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What It's Really Like to Have a Post-Viral Syndrome

My postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome were the result of an unassuming virus. I was a healthy 21-year-old with a normal pulse and normal blood pressure. My feet didn’t turn purple upon standing up. I didn’t become lightheaded at the drop of a hat. I could run, dance and stand for as long as my heart desired. My brain wasn’t foggy and I wasn’t ridiculously dizzy or disoriented. Lights and noises weren’t so overstimulating, and I didn’t feel like I was walking through quicksand the majority of my life, nor did I struggle to open heavy doors or to hang up shower curtains. Trying on clothes in a dressing room didn’t spike my pulse up to 150 bpm, and I could go out in the summer heat without feeling absolutely dreadful.

Thus, for me, a casual run-of-the-mill virus turned into a very serious chronic condition. One infection changed my life dramatically, just like that. Ever since then, life has been full of doctors appointments, medications, medical tests, insomnia, extreme exhaustion, headaches, food intolerances and lots and lots of time spent on the couch.

This being said, knowing that COVID-19 has the potential to dramatically change the lives of so many people (long-term) is extremely frightening — particularly because many people are still brushing it off as an innocent virus that their youth or their “good” health will protect them from. They aren’t considering that they too could lose their health long-term.

This is probably why I feel so sensitive about how lightly some people are taking this virus and the safety precautions associated with the virus. I’m really scared for those whose lives may be permanently changed both while they have this virus as well as potentially for years after — if not for life. I’m deeply disheartened by those who still refuse to wear masks and those who continue to go out with friends or go on (non-essential) trips or vacations.  Their choices reflect a lack of compassion and empathy for the lives and wellbeing of the people they may spread it to.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

I’ve accepted where I am in life, and despite carrying the heavy burden associated with losing my health, I can honestly say I am happy. But this does not mean, in the least bit, that I wouldn’t rather be “healthy.” I would take my health back in a heartbeat if I could.

I just wish with all my heart that everyone would step up and take care of themselves and of each other, so fewer people will have to learn to live with the heavy weight of a (post-COVID) chronic condition.

So know that your actions and choices are a part of this pandemic. You can be someone who cares for others and makes the hard choice to stay home and sit things out (for just a while longer), or you can be someone who is part of the spread of this painful, devastating virus.

It’s your choice. I hope you choose compassion.

Image via contributor