Community Voices: What’s it’s Like to Have Long Covid: A Personal Story

~ Submitted by Holly Chessman

Today, I’m weary.

No, that doesn’t really cover it.

I’m bone-achingly, mind-numbingly exhausted.

I’m so tired (how tired are you?!)…I’m so tired that I cried five times at the doctor’s office, and then again as I gave myself permission to eat a consolation bowl of ice cream when I got home. I’m so tired that the staircase to get up to my bedroom transformed into a mountain and I wasn’t sure I could survive the trek to the peak so I could take a nap. I’m so tired that I went into a panic, wondering where I’d set my phone…as I was typing this. ON. MY. PHONE.

Unfortunately, this day is not particularly unusual. You see, I have post-acute sequelae SARS-CoV-2 (PASC). It’s more commonly known as Long Covid.  More than 40% of those who get Covid also get PASC. Note that this isn’t limited by age, race, nation, or gender. The Covid variant doesn’t matter, though your odds of ending up with Long Covid are 22% higher with this latest variant.

It also is not limited to those who had severe Covid infections. In fact, mine, by all accounts, was relatively mild. It’s the after-effects that have been the kicker.

And the effects are many. Because Long Covid is an umbrella term, it can refer to a number of separate but related syndromes with a variety of causes, symptoms, and treatments. It covers ongoing Covid symptoms, issues recovering from a hospital stay, continuing illnesses exacerbated by Covid, and/or entirely new problems resulting from the virus.

In my case, Long Covid causes breathing issues (similar to that which I had six years ago when I had a pulmonary embolism), as well as variety of grueling issues I never had before, most of which fall under the label of “dysautonomia.” Basically, things that should work automatically don’t: temperature regulation, digestion, heart, etc.

This, in turn, causes:

• Circulation troubles and incorrect oxygen dispersal – Heart strain, chest pain, and blue hands if I’m cold
• Post-exertional malaise (PEM) – Any exertion, even talking or sensory exposure or the mental effort of reading a book, wipes me out and brings me full body aches
• Constant exhaustion – Similar to energy-sapping effects of chronic fatigue syndrome (ME/CFS)
• Body temperature mismatch – Sometimes I get boiling or freezing for no discernible reason
• Panic attacks – With no trigger, they can come on suddenly and stay for hours, sapping energy and adding to my distress
• Cognitive dysfunction – Otherwise known as “brain fog”

And there are many more issues than that, some resulting from the fact that my body is constantly in “fight or flight” mode. The discomforting effect is widespread, debilitating, and constant.

I used to run a large marketing team for a software company, managing people and projects with ease. I would mentor people in my free time, and I had started writing my second book. Now it takes effort to remember not to put the cereal in the fridge and the milk in the cabinet (again).

I have four kids. I often can’t keep up with what they’re telling me and am too weary and in pain to read bedtime stories. I feel horribly guilty. How can I be a good parent when I can’t even take care of myself?

I used to hike five miles with ease. Now, I can no longer walk the dogs. In fact, I can’t distance walk at all. I congratulate myself if I can make it across the yard without stopping. Any further and I use a wheelchair.

I hurt everywhere, every day. I fall asleep at random times. I need days to recover from a single conversation, so I often feel socially isolated. I’ve also been told that it will likely take, at minimum, six months for me to recover. I know people who have been dealing with Long Covid for years now.

Even so, it’s not all doom and gloom. Many long-term, full-body illnesses like dysautonomia, chronic fatigue syndrome (ME/CFS), and fibromyalgia are getting the spotlight because they have a lot of overlap with Long Covid. These are illnesses that, in the past, mostly affected females and were brushed aside as “hysteria.”

In fact, Dysautonomia International has noted this about POTS (a form of dysautonomia): “The average time to diagnosis is 5 years and 11 months. 85% of POTS patients are told it’s ‘all in their head’ or given similar psychiatric labels prior to receiving a POTS diagnosis, but research shows that POTS patients are no more likely to have psychiatric disorders than healthy controls.”

With both genders and such a high volume of people affected by Long Covid, it’s becoming much more widely accepted that these challenges are physically based, not caused by anxiety or mental mindset. They are truly awful to deal with. It’s fantastic that the medical community is finally taking them seriously and looking for cures.

I hope that, if you know someone suffering from any one of these problems, you honor their affliction and exhaustion, and support their struggle. It’s real and it’s horrible. It certainly doesn’t make it any easier on a person who is trying to handle one of these illnesses, if they are also fighting to be believed.

On a personal level, my friends, family, and community have rallied around me. I love to give and I don’t expect anything in return. Now that attitude is coming back to me a million-fold. People have shared photos, bouquets of flowers, a meal train donation page (https://www.mealtrain.com/trains/mq5843), funny texts, snail mail letters, and more. Everyone has been so kind and generous. My heart is filled with gratitude and love.

I also appreciate that Long Covid has forced me to slow down and take in every moment of life. As I sit in my yard, I see the flowers slowly unfolding, birds building their nests, and life returning to New England.

Still, I won’t be sad when my bout with Long Covid is over. I love to write, but today, even putting this article together has drained my energy.

I need a nap. Because really and truly, I’m weary.

Oh, so very weary of it all.