longhaul…

In the near decade since I was diagnosed (the ten year anniversary is in just a couple weeks), I have never heard POTS mentioned on the news.

Until last week.

Husband and I had the local nightly news on in the background while we were preparing an elaborate dinner of frozen pizza and juice boxes when I thought I overhead the young newscaster with the good hair reference postural orthostatic tachycardia syndrome. At first, I doubted what I heard, partly because my attention was elsewhere and partly because the newscaster butchered the words “orthostatic” and “tachycardia”. But after running to the tv and seeing the topic was COVID-19, I knew I had heard correctly.

Not long after the pandemic began, chatter emerged about a certain type of COVID-19 patient: the longhauler. Longhaulers were experiencing symptoms of overwhelming fatigue, tachycardia, lightheadedness, exercise intolerance, and pain for weeks or even months after testing positive for, and recovering from, COVID-19. Many of the longhaulers only had a mild case of COVID, but the persistent symptoms had left them house- or even bed-bound. According to this article, the average age of longhaulers is 40, and women outnumber men 4:1, as typical with many chronic illnesses. Initially, doctors struggled make sense of the long haul, but those of us with POTS, ME/CFS, fibromyalgia, or other chronic illnesses weren’t surprised by the development. If anything, we were surprised that this came as a shock to the rest of the world.

Because POTS and ME/CFS aren’t new. POTS and ME/CFS after a virus aren’t new. I would even venture a guess that POTS and ME/CFS after a coronavirus aren’t new, given the variety of coronaviruses that already exist. Post viral illnesses have been around for as long as the viruses that cause them.

And longhaulers certainly aren’t new. I know because I am one.

I was relatively healthy throughout my childhood and young adulthood. A mild cold here, some seasonal allergies there, but nothing noteworthy. All of that changed after a study abroad program in law school. I caught some kind of respiratory illness while in the Czech Republic. The flu itself was unremarkable – a couple days in bed and some coughing for a couple more – but its effects persisted. I suspect I had mild POTS even as a teenager, but something about that Czech flu elevated it. Even now, some sixteen years later, I haven’t felt the same.

POTS can be caused by a number of triggers, including pregnancy, physical trauma (such as surgery), serious infection or injury, or illnesses such as Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Disorder (MCAD), Lyme disease, and Epstein-Barr. There are dozens of potential causes, and a viral illness is among them. There’s no reason to expect that COVID-19 would somehow be different.

I have a Google alert set up for “POTS”, and the number of hits I receive has increased dramatically in the past year. I will post a handful of articles below about POTS and COVID-19, if you’re interested, as just a very small sampling. Suddenly, people are talking about POTS. I’m grateful that news outlets are discussing medical conditions they can’t even pronounce, but a part of me was initially frustrated with the sudden onslaught of articles and news stories. The world didn’t give a fuck about POTS when I fought for years to get diagnosed, or when the latest person with POTS committed suicide, or when a friend was repeatedly denied insurance coverage for her standard POTS testing and treatment, or when 25% of people with POTS stop showing up for their jobs and have to file for disability. No one was writing articles or delivering the news or organizing a public outcry about all of the people who weren’t recovering from viral illnesses.

I first posted on Twitter in June warning people who were still experiencing symptoms long after having COVID-19 to ask their doctor about dysautonomia (POTS is a form of dysautonomia). POTS specialists have directed COVID longhaulers to our online support groups as a resource. We opened up our arms and our communities to the longhaulers, communities we forged with our bare hands because no one formed them for us. I am grateful to the COVID longhaulers for bringing much needed attention to POTS, which will hopefully bring more funding, better treatments, and faster diagnoses. Yet I’m angry with the world that it took a global deadly pandemic to get there. Even in all of the recent news about POTS, the focus is on COVID-19, rather than education of the syndrome.

But as I was writing this, I remembered that we’re all standing on the shoulders of the giants that came before us. Every patient that didn’t just storm out angrily when her doctor asked if maybe it was just “woman troubles”, but went back with journal articles; every patient that brought textbooks to his doctor before the internet; every patient that didn’t believe the lies, that appealed denials, submitted articles, demanded a diagnosis, refused to accept that it was just “anxiety”, talked to anyone who would listen and refused to just keep quiet about it, wrote blogs before they were commonplace, spread the names of the doctors who would listen, volunteered as guinea pigs so everyone who came after would have fewer scars, and who gathered in dingy medical center rec rooms because that was the only place they could find each other – all of them made it possible that I only spent years seeking a diagnosis, and not a lifetime, like they did.

I’d like to think that our work made it possible for COVID longhaulers with POTS to get a diagnosis in months. And with any luck, longhaulers will help those incoming freshmen classes of POTS patients reach a diagnosis in weeks. It’s progress, one step at a time.

If you developed POTS from a COVID longhaul, thank you. For demanding answers. For standing up for yourself. For not just accepting that a viral illness should last for months, even when your concerns were dismissed. You are my brothers and sisters. You’re me, sixteen years ago. I will do my best to protect you and help you find answers and show you what I have learned, for as long as it takes. But when you’re ready, you have to pick up the torch and do the same for others. To quote my favorite poet, this is our endless and proper work.

“and here you are living,
despite it all.” – rupi kaur

Smell ya later.
– Linds

Below is just a very small sample of the articles discussing COVID-19 and POTS:

Psychiatric Times, “Mysterious Post-COVID Symptoms Aren’t All in Your Patients’ Heads” 

California Healthline, “Long-Haul Covid Cases Cast New Light on Chronic Fatigue Sufferers”

CBS Baltimore, “Clinic At Johns Hopkins Hospital Helping To Treat COVID-19 Patients With Long-Term Effects”

WKBW, “Some COVID-19 “long-haulers” develop nervous system disorders”

Medical Xpress, “Fatigue, loss of smell, organ damage: A range of symptoms plague many long after COVID-19 infection”

KIITV, “A closer look at the long term symptoms of COVID-19”

KJRH, “POTS: the chronic, incurable condition some COVID patients are developing”

Journal of American Medical Association Network, “As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts”