Don't let me be misunderstood: Top 12 Myths About Long Covid

Oh Lord, please don't let me be misunderstood...(Animals and Nina Simone)

(UPDATED November, '22)

I've talked about the cardiac doctor I consulted with (at a major US hospital--I won't mention the name as you don't "bite the hand that feeds you) who looked at my heart images (I've literally done them all) and said, "your heart is fine." The same doctor went on to talk about a patient who had a frequent urination problem. In the midst of his consultation, the patient said he needed a bathroom break. "Just a minute," the Dr. replied going forward with the appointment. Twenty minutes passed and he said to the patient, "I thought you had to go to the bathroom?" "Oh yeah, I thought I did," the patient replied. 

This bullshit anecdotal story was the cardiac doc's way of saying, "it's all in your head." This is probably the most frustrating aspect of the life of someone suffering from Long Covid. You don't think I don't want to run, you don't think I want to race with Liam again, you don't think I want to go back to work?!?

There's still no consensus on what causes Long Covid other than, the medical community has seen this before as a post viral multisystem illness. Previous SARS, Lyme Disease, or name your exotic tiki tiki virus and they're "seen this movie before," but this time it's post Covid-19. Inversely, there's massive confusion in the medical community and more so on forums and social media.

I'm not a doctor. I'm not a medical expert, but I do have twenty months of experience. With that, the top ten myths around Long Covid. (consult your local physician.)

1) It's all in your head. Just like my piss story, many that suffer from Long Covid are met with skepticism. I'd say it's not in your head (mentally that is, ) but the coconut is a high target for Long Covid otherwise known as "brain fog."

2) Are you still contagious? As I've talked about before. The tornado ("Rona") ripped through town and left, but left a swath of destruction behind. No, I'm not contagious.

3) Does the vaccine improve or cure you? I'm double-vaxxed and while there are stories of improvement post vaccination, it had no effect on my journey. Inversely, there are instances of people regressing or suffering "Vax injury." I have good online friends who have got worse. Again, I'm not a doctor--please consult yours. 

4) Doctors know what Long Covid is and how to treat it. While there are studies that hold promise, we are still very much in the research phase of this. Not knocking family medicine practices (mine has been amazing) but a larger issue when dealing with your regular doc. No disrespect but they are ill-equipped to deal with (or diagnose) Long Covid.

5) Insurance companies and Social Security know how to manage disability for Covid long-haulers. Um, no. I haven't done a Gallup poll on this, but I hear more stories about denial of benefits than those that have gained benefit from either private insurance or Social Security. For me, I did have long-term disability (through insurance; not Social Security) but learned yesterday my benefits expired December 1st. Hoping to get that "back on track" with a new case manager, but I feel I'm starting from scratch again and could have a financial disaster on my hands at any moment.

Perhaps if you saw me between midnight and 5AM, you wouldn't say, "you don't look sick."

6) You look fine, are you sure you're sick? In my case, I get the occasional "you look good," and numerous "are you feeling any better" questions. I'm rich in terms of friends and family that care but looks are deceiving. After 693 days of being sick, you have to adjust to try and live some sort of normal life. As I type from my couch, I may look fine but my chest is burning and my bloodstream feels like there's a battle going on.

7) People with Long Covid don't care if you're vaxxed or not. Me personally. No. When we see Aaron Rodgers lie about being vaxxed (and consulting with a podcaster for medical advice) it pisses us off. In my case, the devil came to town before swabs and long before vaccines. You can be sure, if I could hop into the DeLorean and fire up the flux capacitor, I'd get vaxxed or not get on that plane twenty two months ago.(UPDATED: See number three above. #pwLC have an opinion one way or the other and feel strongly about it. I still believe in the vaccine, but personally have doubts on boosting. CONSULT YOUR DOCTOR AND EXPERTS. I'M NEITHER.) 

8) We're "out of the woods" with Covid and Long Covid. No, no, and no. My brother's sister-in-laws mother had someone visit that had Covid. She died three days after exposure. My oldest brother just contracted Covid and is dealing with fevers and borderline pneumonia. No, no, no, we're not out of the woods, I think people are just exhausted over it; just like all news stories eventually fade away except Long Covid is sticking around for awhile it seems and the new Omicron variant seems to be even more contagious (NY Times.)

“The data out of South Africa suggest that the Omicron variant is spreading more quickly than Delta,” Janet Baseman, an epidemiologist at the University of Washington, told me. Dr. Rebecca Wurtz of the University of Minnesota said, “Omicron is more contagious.”

9) Test results show Long Covid damage. After 100+ Doctor appointments, and more tests than I can count including at least three nuclear injections (for imaging,) current (predominantly lung and heart) tests don't tell the story. (UPDATE: Since my original post, I've had three Biomarker panel tests done that confirm Long Covid and some of the damage including vasculitis. See RTHM post Here. Most) stories like mine of patients continuing to spin on the medical "hamster wheel" looking for answers simply run up insurance costs with "unremarkable" results. Given theories of molecular or (micro) blood clots, they simply aren't picked up by pre-covid tests and imaging.

One of the more poignant stories I've seen that resonated with me was Anderson Cooper's segment on 60 Minutes featuring the Long Covid team from Mount Sinai Hospital.

Dr. Zijian Chen: So your immune system, when it's active, what it does is it starts fighting the virus by activating-- these cells that kill the virus. But what happens is sometimes these cells they damage the organs that the virus is next to. So it's almost like collateral damage. Sometimes the only way to spot that damage is on the autopsy table after a patient has died. 

10) A mild case of covid means you won't get long covid or will have a mild case. (Borrowed this one from JB Kennedy on twitter.) These results are all over the map. There are loads of stories (like mine) where the onset didn't require hospitalization--I wasn't on a ventilator. Just because you got Covid, doesn't mean you'll get Long Covid. One theory I picked up from one of my Mayo Clinic doctors was that athletes (and Type A individuals) seem to be hit harder. Theory is that (like me,) they "push through" the illness; never giving the body a chance to rest and ultimately dig a much deeper hole.  

11) Long Covid is cheap. (Okay...this isn't a myth but a brutal aspect of our lives.) As I pointed out in my last update post, I went from a successful marathon runner and well-paid software sales executive to unemployed, on tenuous disability, filed for social security disability, looking to rent our home to cut expenses and paying $2,000 a month for COBRA continuation of health coverage. Do the math. Long Covid is a financial disaster.

12) UPDATED: You can exercise your way out of it. The acronym GET (graded exercise therapy) infuriates me. I've been through two such programs. The idea is (and this part I'm used to as a former marathon runner,) slowly build up endurance and gradually build up strength and cardio to regain your former self. I call bullshit. I have been through two such programs--granted a bit earlier on (to halfway through) my three year journey but both sessions yielded nothing and the second one set me back. I call this "barbaric" and medically negligent. I'd put CBT (cognitive behavioral therapy)--think your way out of it, in the same category. You'd be better off with CBD.

Welcome to Camp Long Covid.