COVID long-haulers need help to be invisible no more
- Tamara Marshall Whiting is a freelance writer and singer who was a long time resident of Nashville.
We live amongst you, yet you choose not to see us. We are the casualties of the war with COVID-19; a reminder that the pandemic is not over, and that it has left many people with the debilitating illness of long COVID.
We, with long COVID, suffer from a wide variety of physical and sometimes mental debilitations that are never validated by medical tests. This lack of validation causes doctors, friends and others to suggest to us that it is all in our heads.
The list of long COVID symptoms is exhaustive. Extreme fatigue is one of the most common symptoms experienced by most long-haulers, as we have been named, but there are a host of others: cough, insomnia, shortness of breath, muscle weakness, headaches, digestive problems, dizziness, blood clots, circulation problems, racing heartbeat, brain fog, anxiety and many others.
The Centers for Disease Control and Prevention (CDC) reports that one in five people who have contracted COVID-19 suffer with long COVID afterward, and for those 65 years and older it’s one in four. I’ve had long COVID since my six-week bout with COVID-19 that began around Thanksgiving of 2020.
But, in the nearly two years I’ve experienced long COVID, I have only met three people that have told me that they have it too. Where are all the others?
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How we make ourselves invisible
Many are out of the workforce, because they simply cannot work anymore. And those who are more able to get out and be seen (on their good days) are reticent to admit they have long COVID, and are reluctant to talk about it.
As hard as it is to talk about, not talking about it makes matters even worse. By not owning our experiences and telling our stories, we perpetuate our invisibility. We make ourselves invisible.
More:What causes long COVID and its strange array of symptoms? Researchers have some clues.
I belong to a long COVID online group, and I find that the feeling of invisibility is one of the most common experiences those of us with long COVID write about. Another common experience that we share online is the unpredictability of our lives.
It is hard to plan anything. We never know when we will feel normal — when we will have a good day or bad day, a good week or bad week, or when after feeling good for some time we will go down into a bout of exhaustion and other symptoms.
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You get better for a while and think for a minute that your long COVID is over, only to have the symptoms come back again. Any time that I’m feeling “normal,” I take as a gift. I relish it, knowing that it can be taken away at any time.
Recently, long COVID is finally starting to get some of the attention it deserves due to more research being conducsted and more articles being written about it. But all we have at this point are theories. So much is still unknown.
Those of us with long COVID want others to understand the old adage “there but by the grace of God go I.” We are all in this together.
Long COVID can happen to any of us. Let us stand together and move the knowledge, understanding and research of long COVID forward so that treatments can be found to ease our pain, and maybe even a cure in the near future.
Please inform yourselves about our illness. We need your support and acceptance to fight this difficult reality and help us to be invisible no more.
Tamara Marshall Whiting is a freelance writer and singer who was a long time resident of Nashville, and now lives in the mountains of northern Georgia near Blairsville.
