Every headline I see highlighting the extended suffering by those who have contracted COVID-19 catches my eye and inspires me to read further. One article recently published in the New York Times titled, “What if you never get better from COVID-19?” by Moises Valasquez-Manoff was particularly interesting.
These people call themselves “COVID long-haulers.” According to the article, Mount Sinai Hospital in New York opened a Center for Post-COVID Care in May. They anticipated treating survivors of severe cases who needed rehab for their lungs and hearts after being on a ventilator. Not many of those patients showed up but patients, mostly women, who were relatively young and otherwise in good health started showing up by the dozens. Presently Mount Sinai has over 1,600 patients.
My interest in this subject springs from the fact that I am a long-hauler from a different mother, so I feel these people’s pain, literally. I have experienced most of the “strange hodgepodge of symptoms, including fatigue, pain, shortness of breath, light sensitivity, exercise intolerance, insomnia, hearts that race inexplicably, diarrhea and cramping, memory problems and a debilitating ‘brain fog’ that can at times make it hard to put a cogent sentence together.”
I have never tested positive for COVID-19, but seven years ago I found out I have Sjogren’s Syndrome, an autoimmune disorder that affects the entire body with primary impact on the moisture producing glands of your eyes and mouth, causing dry eyes, dry mouth, pain, and fatigue.
To fix my dry eyes, I finally found an ophthalmologist who put plugs in my tear ducts. It was like a miracle. I immediately felt relief after two years of feeling as though I had boulders in my eyes. Subsequently I had all my tear ducts cauterized. I still need to use lubricating eye drops but much less frequently.
As time went by other symptoms cropped up presumably because of Sjogren’s. I lost my sense of smell and taste. When that became a symptom of COVID-19, I just said, “been there, done that.” My hearing became a casualty as well. In other words, I’ve lost nearly all of my senses, but I’m trying really hard not to lose my sense of humor.
What is interesting about the COVID long-haulers is that because it is related to the pandemic there are clinics cropping up everywhere to treat these patients. Also studies are underway to track the cases. It is estimated in New York about 10% of COVID-19 patients suffer from extended illnesses, which could mean roughly 100,000 people are chronically ill. If you calculate the affected people based upon the number of confirmed cases in the U.S., which stands at 27 million at the moment, that would mean, assuming the 10% calculation, there may be 2.7 million cases in the country, and growing.
Some experts are comparing COVID long-haulers to people with Myalgic Encephalomyelitis, more familiarly known as chronic fatigue syndrome or ME/CFS. Like all auto-immune disorders the cause is unknown, which they like to call “idiopathic” (and I call it idiotic). Long ago sufferers of ME/CFS were dismissed as being psychologically impaired. Eventually doctors accepted it as a “syndrome” and began treating it as such. While there is still a long way to go to figuring out how to treat ME/CFS, that groundwork will hopefully assist COVID long-haulers as they navigate their challenges.
By September, the World Health Organization’s use of “long COVID” signaled that the term had crept into mainstream medical awareness. Doctors had formulated their own phrasing as well: “post-acute COVID-19 syndrome.” Now that the phenomenon has been designated as a “syndrome,” perhaps fewer patients will be dismissed as having “psychological problems.”
Before I received my diagnosis, I went through several months of trying to explain to my doctors what I was feeling. I was subjected to an MRI and CT-Scan to determine the cause of the hearing loss and other symptoms and donated what seemed like pints of blood for tests. Finally, one battery of blood tests revealed the marker that suggested Sjogren’s and I was referred to a rheumatologist for confirmation.
Once my condition had a name, I was so relieved. I thought for sure that I’d be given a pill or some medication to cure me, but that did not turn out to be the case. If the medical professional can’t explain why you have what you have, they are equally as hamstrung to figure out how to fix what you have.
A friend of mine who has lived with multiple sclerosis for most of her life gave me the greatest pearl of wisdom when I first got diagnosed. She said having MS was like having an uninvited guest at your house all the time. You have to accept it and learn how to deal with it. Some days are easier than others. Some days you get angry with your body, the body which you had taken such good care of for so long, the body that is now betraying you for no logical reason. You feel as though you’ve been robbed and there are no disease cops who can hold the culprit accountable.
Reading about and listening to the victims of COVID-19, especially the COVID long-haulers, I want to tell them that I get it, I understand their pain. But they have an added level of anger because their government did a lousy job at protecting them.
I wrote down a quote from a New York Times article dated March 15, 2020, written by David Leonhardt: “In the U.S. scientists expect between tens of millions and 215 million Americans will ultimately be infected, and the death toll could range from tens of thousands to 1.7 million.”
Our government ignored the science then and now we are dealing with the consequences. As a result the safety net is going to be stretched thin because of this pandemic. I just hope it is big enough to capture everyone, including the COVID long-haulers. I wish for all the COVID long-haulers that they are able to get the help and support they need as they get used to their new normal, because feeling like crap and being alone in your misery is no fun.
(Susannah Colt lives in Whitefield. She can be reached at susannahbcolt@gmail.com.)