Why Didn’t They Expect Long Haul COVID When They’ve Known About Post Viral Syndrome for Over 100 years?
Medical experts should have been prepared to help those who would develop long-haul COVID and not dismiss their symptoms as imaginary.
I thought I had recovered from COVID-19. I still felt exhausted and had some pain in terms of headaches and general body soreness but I just figured it was my body still trying to build itself back up from over a month of being ill. After I got a negative test result, I thanked God that I’d been one of the lucky ones, and planned to get back into life.
I’d only had mild to moderate symptoms, so it wouldn’t be long before I was feeling 100 percent, I reasoned. That’s what my doctor said and I believed her because that’s how viruses worked, right?
Compared to the full symptoms the ones that were taking longer to resolve didn’t seem nearly as bad. I didn’t have a cough any more, I was able to take deep breaths and though I still had some heart palpitations, they were less frequent and didn’t last that long. I started walking, at first to the corner and back, then around the block and then I was able to make it all the way to the store and back as long as I stopped and sat every so often. I pushed myself, thinking that was the way to build my body back up. I also thought that all the muscle and joint pain must be due to laying in bed for the better part of a month.
Thankful that I was one of the lucky ones who had survived COVID, as the days stretched on and the symptoms remained, I worked to ignore them and go about my day. Given I also have fibromyalgia and some kind of autoimmune condition they can’t diagnose, I attributed the symptoms to those conditions since they were very similar.
But they weren’t exactly the same. The brain fog was much worse, which had always been my most frustrating symptom. I had always been able to count on my intelligence and my ability to express myself clearly in my writing. Now I read through what I’d written in recent days, and realized how inarticulate it seemed in places.
I’d had some memory problems from the other conditions but not like what I was now experiencing. This also affected my writing. I would be working on an article and completely lose track of what I was saying from one paragraph to the next. Or I’d start an essay and within a few sentences I’d have no idea what it was supposed to be about. I kept telling myself it took time to recover and that was likely making my old symptoms worse.
But the days kept passing and though I tried to avoid thinking about how long I’d had the symptoms, eventually I couldn’t deny it any longer. I called my doctor and was told to be patient, that it just seemed to be taking some people a little longer to get over their symptoms than others. She said I was fine, I’d had a negative test, and everything would go back to normal soon.
The week following this call was a particularly bad one. I had three migraines, continuous joint pain, and heart palpitations along with the exhaustion and brain fog which had never remitted. There were two days that I got up, nuked some coffee then went back to lay down, and before I knew it the windows were dark, and it was nighttime, though I hadn’t fallen asleep. I had no idea where the time had gone.
I phoned my doctor again to see if I could have the virus once more, and to ask if I should get another test. She reassured me again, but said if the symptoms continued through the next week and I wanted to be tested again she’d agree. They did. The test was again negative. The curious thing, though, was that apparently, I had no antibodies. My doctor said that wasn’t entirely rare with this virus and to just continue to follow the guidelines to protect myself though they didn’t think you could get it more than once, better safe than sorry.
That’s not how these things are supposed to work. When your body fights off a virus, it produces antibodies. Hadn’t they assured us that we would all have antibodies for some period? Why would some of us not come out of it with at least a short time when we couldn’t get the virus again? And could you get again? Though the thinking back then was that you couldn’t, if you had no antibodies for the virus, what was supposed to protect you? I doubled down on precautions, rarely leaving my apartment.
That was about five months ago, four months after I’d started having symptoms, almost three months after I’d gotten a positive test result, almost two since I’d gotten the first negative test result. This amounted to a grand total of nine months of symptoms. And one month since I’d first heard the term “Long Hauler”.
What Does It Mean to Be a Long Hauler?
I first heard this term when a friend of mine used it to refer to me. We were talking about eating healthy, and she brought up those food services that deliver meals with all the ingredients measured out for you to make yourself. She suggested that maybe one would be good since it would make meal preparation easier and anything easier was better, considering I was a long-hauler. We were out walking by the lake and between the wind and our masks I thought I’d heard her wrong.
I asked her what she had said and she used the term again. Not knowing what she was referring to, all I could wonder was whether she thought I’d gotten a job driving trucks cross country. We laughed about this and she said the term was used for people who continued to have symptoms long after the virus was gone.
The terms “long hauler,” “Long COVID,” and “Post COVID Syndrome” have been used recently to describe people who continue to have symptoms after recovering from the virus. The majority who develop it are women. The population is divided into three groups.
The first group are critically ill patients, almost all of whom were admitted to intensive care, who are expected to have a long recovery and who may have permanent organ damage, particularly in the lungs. The second group includes people who had mild to moderate symptoms and who have organ damage such as inflammation of the heart or encephalopathy (brain damage or disease) which is possibly permanent. The third group, which includes as many as 10 percent of those who contracted the virus, have long term, multisystem symptoms without evidence of organ damage.
Those of us in the third group are exhausted all the time, have headaches and often migraines, muscle and joint pain, insomnia and mood and cognitive disturbances. It looks a lot like fibromyalgia, chronic fatigue syndrome or post viral fatigue syndrome. They also currently believe that while this group doesn’t suffer from organ damage like the other two do, that many of those in this group may never fully recover.
Post Viral Fatigue Syndrome (PVFS)
When I heard the term “Post Viral Fatigue Syndrome,” I googled it. Evidently, the medical community has been aware that many populations suffer from significant fatigue syndrome often combined with pain after recovering from a virus.
Following the 1918 Spanish Flu outbreak there were high rates of PVFS. In 2003, following the SARS outbreak which infected over 8000 people worldwide, PVFS was observed in over half of the patients at one-year post- recover. Four years late, a follow-up investigation found that over 40 percent of the patients surveyed still suffered from extreme fatigue and over 27 percent met the diagnosis for Chronic Fatigue Syndrome. In 2009, following the Swine Flu (H1N1) pandemic, they found that those who had contracted the virus were more than twice as likely to suffer from chronic fatigue syndrome following the illness compared to those who hadn’t been infected.
Research has also shown that almost 30 percent of Ebola survivors experienced extreme exhaustion after they had recovered along with joint and muscle pain, severe headaches, eye problems and insomnia. These symptoms appeared to last for years, while some have hypothesized that they may be permanent.
Post-COVID Syndrome looks like these other post viral conditions, though shortness of breath and loss of taste and smell are more common in the COVID group. To date they have not found an effective treatment for PVFS.
Why Was This Never Mentioned Until Tens of Thousands of People World Wide Were Suffering From It?
It didn’t take long to determine that the COVID outbreak was a serious pandemic affecting millions of people world-wide. And while I understand that research needed to be focusing on a potential cure, vaccine, and decreasing the severity of symptoms in those who were the sickest, it seems that medical experts also would have seen Long-COVID coming.
Yet, for months now, most people with the syndrome were either told to be patient or that it was all in our heads. Those of us suffering with symptoms were often unaware that it was a common problem since we weren’t able to interact with others due to the virus. It wasn’t until support groups began forming to provide validation and comfort in light of how many were told they weren’t really experiencing symptoms, that we began to realize how wide spread the problem is and how much suffering it is causing.
This is especially curious since they’ve identified this syndrome in people who have recovered from SARS, which is another coronavirus. Research now suggests that over 90 percent of those who recover from COVID have at least one long lasting symptom that affects their daily functioning, the most common being fatigue, pain and trouble concentrating.
It’s hard to express how much this affects your ability to function on a day-to-day basis to those who haven’t experienced it. While the symptoms aren’t as severe as what I experienced with the actual virus, after 9 months of them it has become increasing hard to do much of anything.
Even on “good” days I am so fatigued and my mind so clouded that the day seems to pass without my being aware of it. I rarely know what day of the week it is and often am days off on the date. A couple of days ago I wasn’t sure if it was the 24th or the 25th and it was actually the 26th.
I have contacted my doctor on several occasions only to be told to do what I normally would to treat the pain symptoms and to try to get lots of sleep for the rest of it. The problem with that is that I’m unable to sleep more than 20–30 minutes at a time and usually just sort of fade in and out through the night, getting up at first light.
Given the rates they’ve observed for this syndrome both before COVID and in COVID patients, millions of people will have it before all is said and done. Hopefully, many will eventually fully recover, though it may take several years for this to occur. They are predicting that some proportion of us won’t fully recover though the hope is the symptoms will at least lessen over time.
So, why did they seem so unprepared for this possibility? And given that it has been seen in people recovering from other viruses, why would healthcare professionals often dismiss reports of it as it were imaginary?
Current Status and Final Thoughts
I am currently seeing a naturopath in an effort to try to find something that will help. She has been introducing things slowly trying to identify the best regimen. I feel a bit better but I’m not sure how much of that is the treatment since I just started with her and how much is due to having a supportive health care person who is incredibly calming.
I am incredibly thankful not to have gotten worse symptoms when I had the virus and to have survived it. So many people haven’t been as lucky and though there are risk factors that contribute to who survives and who doesn’t, there are also plenty of young adults who are healthy and in great shape who don’t make it. There’s no absolute prediction of who will get it and who will survive.
But medical experts could have predicted Long Hauler Syndrome and realized it was likely that it would affect millions of people from past experience. At a minimum, a description of the syndrome should have been included with the rest of the information about the virus and physicians should have mentioned it when treating patients as we recovered.
Some may argue that this could have turned it into a self-fulfilling prophecy where people developed symptoms because they expected to, but if presented correctly as part of the overall picture of COVID-19 this effect could have limited. Then those who developed the symptoms would have known to contact their physician if they found themselves continuing to suffer from symptoms. Even if there wasn’t a treatment available, at least we also wouldn’t have been made to feel like we were crazy for months before hearing about the condition or realizing how many others also had it.
Treating those who are ill with the respect that everyone deserves strengthens a patient’s will to fight their symptoms. Minimizing it or suggesting that they are making it up or imagining it only leads to people becoming hesitant to raise their symptoms with other health care providers. This will lengthen the amount of time that transpires before they are provided with something that can relieve their suffering. It’s long past time that we stop telling patients that the symptoms they report to their healthcare providers are all in their head.
Natalie Frank has a Ph.D. in Clinical Psychology. She specializes in Pediatrics and Behavioral Medicine. Her collection of poetry, Disguised I Breathe, In Love I Hold, can be found here on Amazon.
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