My Chronic Illness Nightmare Doesn’t Need to Become Your COVID-19 Reality
The Insidious Hit and Run
Imagine that you’re young, healthy and headed back to school.
Crisp autumn weather gains ground against the retreating heat of summer. The turn of the seasons ushers in the excitement of a fresh chapter ahead: a tabula rasa of undiscovered potential, hinting at a promising future of achievement, fulfillment and delight.
You’re fired up for what’s in store. For regardless of whatever is happening in the world out there, your rich reservoir of inner resolve has proven reliable through any adversity. You’ve got your eye on the prize: top degree program, stable career, beautiful family.
One month passes. Suddenly, your laser-sharp focus is derailed by a sore throat. It’s quickly swallowed by congestion, which turns into a fever, which turns into body aches, which turns into debilitating fatigue.
“Damnit,” you think. “Now is not the time, with exam week around the corner!”
You do your best to study through the weekend; but the material doesn’t stick in your head like it normally would. You end up needing to spend most of the time in bed instead.
“This is just one of those nasty colds,” you tell yourself. “I’m sure I’ll bounce back in a few days.”
Annoyed but undaunted, you drag yourself to class the next week and manage to attain acceptable grades. The worst of your symptoms fade away, and you find yourself back at the top of your game by the time the next set of exams roll around.
Or so it appears.
On paper, you achieve top grades and the semester concludes well. But your inner state tells a different story. In fact, your mind is barely functioning and your body is ready to collapse with exhaustion. A blanket of darkness descends upon you, crumpling your spirit under the weight of uncertainty and fear.
When will this sickness ever end?
Months later, it would become clear that this was just the beginning: the viral prodrome that would portend the troublesome future to come.
From Picture-Perfect Health, to Chronic Illness Nightmare
This is the story of how my autoimmune illness, encephalitis, began. But it could just as easily be the story of the coronavirus (COVID-19) in a fit, bright, dynamic student in the upcoming school year.
Despite my healthy lifestyle, my immune system took a sharp turn from its normal 21 year course into the territory of chronic dysregulation. The flu-like symptoms gradually worked themselves out, but my memory problems persisted. This started in my fifth semester of university and remains a difficulty to this day, six years on.
I cannot emphasize enough: this is not your garden variety “brain fog.” You know, the one where you might have gotten too little sleep, treated yourself to a cheat day at the bakery, taken certain medications or let emotional stress run away on you. Over time, my symptoms deepened to include significant verbal fluency issues, executive functioning problems, slowed processing speed, impaired reasoning and attention deficits.
This is a level of cognitive dysfunction that led to me going from a high-functioning, award-winning scholarship student, to a university dropout who once needed five days to clean her barely disheveled bedroom.
What?! That sounds ludicrous, yes. Even my first instinct right now (in an improved state) is to think that must be exaggeration. But I kid you not. Think it through for a moment.
Laziness or procrastination aside, what kind of cognitive state would you need to be in to have to devote an entire day of your life—let alone five—to the sole purpose of cleaning a bedroom, one that should take a normal person less than 30 minutes to tidy? Consider your (in)ability to maintain goal-directed behavior, create a basic set of mental instructions for your body to follow through, categorize objects in your head and initiate basic physical actions that most humans can put on autopilot (moving your arms, grasping objects). Now extrapolate that level of mental capacity to what it must have been like to accomplish the normal activities of human existence—learning, planning, cooking, grocery shopping, working.
Trust me, this level of dysfunction is not something you want to experience firsthand. You go through a deep level of excruciating agony that can easily strip you of your sense of humanity as you lose basic control of your mind and actions. On top of that, add the mental anguish of seeing multiple doctors that don’t know how to help you, continual deterioration and the unknown of if and when you’ll ever be functional again.
All of this is to say: there’s an accelerating virus out there—one that may seem relatively benign—that can cause the same devastating, long-term impacts as what I’ve just described. COVID-19 has been shown to cause encephalitis, as well as dementia-like symptoms and psychosis, in those in their 20s, 30s and 40s. And I’ve just illustrated how this could derail the course of your entire life.
Normally, there’s no point in living with this fear. There’s not much you can do to avoid developing autoimmune encephalitis, and improved physician awareness and treatments are slowly leading to better patient outcomes. It’s estimated that at least 500,000 people worldwide are diagnosed with this disease of brain inflammation each year, many of which were otherwise healthy individuals. There’s just something that causes their immune system to go amuck. It could be a wide variety of infectious triggers (viral, bacterial) or the presence of an idiopathic teratoma (a type of tumor), but in most cases there is no discernible cause.
However, these are highly abnormal times. We’re in the midst of a serious pandemic. And it is leaving devastating, long-term effects on a nontrivial number of average, everyday people. Before you dismiss the threats of the coronavirus because you consider yourself healthy, young, strong or somehow immune to severe sickness, please educate yourself about the risks of actually contracting COVID-19 or spreading it to someone in your circle.
Coronavirus “Recovery” Doesn’t Mean What Most People Think It Means
There’s more to the picture than confirmed cases, “recoveries” and deaths. COVID-19 statistics fail to capture the prolonged convalescence, ongoing gastrointestinal issues, debilitating fatigue, sustained organ damage and other worrisome sequelae that some survivors battle, for greater than the two week recovery timeline commonly suggested.
“Fine. Maybe I’m one of those unlucky ones, or have to spend some time in the hospital, or miss a month of work; but I’m extremely unlikely to die” you might say.
Oh, if only that were the end of the story.
A crude estimate in the British Medical Journal suggests that one in 10 people who contract the coronavirus sustain significant symptoms three months into the illness, left with the uncertainty of whether they will regain their previous level of function. Evidence is mounting to suggest that many will endure years of major burden and healthcare expenditures.
Reports of lung scarring (according to the National Center for Biotechnology Information, BBC News, New Scientist), kidney issues (Hopkins Medicine, AJMC, PBS), heart damage (The Harvard Gazette, Kaiser Health News, Penn Medicine), neurological disturbances (The Lancet, BBC News, MedPage Today) and other serious, ongoing health complications—across all ages and including those without underlying health issues—are being described with increasing incidence. It has become clear that no demographic is immune. We’re all susceptible to the possibility of several months (or years) of rehabilitation, decreased functioning, chronic medication, or monitoring. Skim this article from Vox on long-term symptoms, one from The Atlantic, and this one from BBC News if you’re not unnerved yet.
Even still, you might be tempted to think, “how can we really know the long-term trajectory, if this virus has only been around for half a year?”
Well, we don’t. Not with absolute certainty. But organs aren’t invincible, renewable resources that can be depended on to miraculously recuperate from internal assault. Bodies can only handle so much before permanent damage occurs. Plus, the impacts of other viruses provide precedent.
The coronavirus responsible for the 2003 SARS outbreak left some patients with chronic lung disease, kidney disease, bone consequences and psychiatric illness years later (Jama Internal Medicine, Nature, American Lung Association).
The coronavirus responsible for MERS, first reported in 2012, is known to cause long-term respiratory complications (Open Forum Infectious Diseases).
Post-Ebola syndrome—involving symptoms that include headache, joint and muscle pain, extreme fatigue, menstrual cessation, clouded vision, hair loss and deafness—has in some studies been estimated to affect > 90 percent of those who survived the 2014 Ebola virus (BioMed Research International).
Myalgic encephalomyelitis (sometimes called chronic fatigue syndrome) causes bed-confining exhaustion, cognitive problems and musculoskeletal weakness, rendering many patients struggling with quality of life (CDC). It’s often preceded by a variety of viral triggers (The Lancet).
While plenty of COVID-19 unknowns remain, and research remains in its infancy, our current knowledge of past and present viruses provide ample cause for present-day concern. Everyone should be taking serious steps to avoid contracting and spreading the virus. There’s only so much that cutting-edge research and world-class physicians can do should you struggle with a complication arising from COVID-19.
My Chronic Illness Nightmare Doesn’t Need to Become Your Coronavirus Reality
Maybe you remain a skeptic. Or maybe the evidence and data points above are too abstract to internalize in a personal way. Let’s get back to my story of autoimmune encephalitis and its enduring neuropsychiatric symptoms.
With a bright future ahead of me, no underlying health issues and the onset of a mysterious virus, I found myself suddenly sidelined from what would turn out to be most of my 20s. Thankfully, I’m better now—sort of. It took me five years to finally find stability at my baseline level of functioning; currently I’m in recovery from an encephalitis relapse. But at least I don’t require anywhere close to five days to clean my bedroom anymore.
Still, I’m left to wonder where I would be had I finished university and been able to establish a stable career.
Instead, I lost prime years of my life laying sideways in bed. I went from being independent and self-reliant, to needing external direction to complete basic daily activities. I endured the awkwardness of needing to drop out of my competitive degree program a second time, after miscalculating the stability of my health and begging for readmission months after I dropped out the first time. Thankfully, I’ve had my mom support me through my darkest times. But I’m also embarrassed I’ve needed to rely on her and my dad to pay thousands of dollars in medical bills.
The sad part is that variations of this story are shared by millions of chronic illness patients in the U.S. alone. My personal lowlights are not a freak anomaly—they’re actually pretty standard in the encephalitis community. And as I’ve mentioned earlier, evidence is piling up that serious neurological manifestations, including encephalitis, are occurring in a scattered subset of COVID-19 patients.
The CoroNerve Studies Group, comprised of researchers throughout the UK, is actively collecting case reports of COVID-19 patients with neurological symptoms. They’ve recently published an article in the Lancet Psychiatry, with a 125 person dataset that reveals 75 percent experienced an ischaemic stroke, and 31 percent exhibited an altered mental status.
One author, Dr. Benedict Michael, states, “whilst an altered mental state was being reported by some clinicians, we were surprised to identify quite so many cases, particularly in younger patients, and by the breadth of clinical syndromes ranging from brain inflammation (encephalitis) through to psychosis and catatonia.”
Similarly concerning findings have been reported in the New England Journal of Medicine. And with concerns voiced by scores of treating physicians in centers around the world, more groups are coordinating global efforts to formally characterize COVID-19’s neurological impacts (Daily Mail, Neurocrit Care).
Please take it from someone who’s been through the wringer, with these types of debilitating neurological symptoms, for years on end: don’t subject yourself or others to unnecessary COVID-19 exposure. Throwing caution to the wind isn’t worth it when the consequences include lasting pain and suffering either to yourself or someone in your community.
Will You Mask Up Against Coronavirus, Please?
“Let us know if there is anything we can do to help.”
This is a common refrain my mom heard from friends, family, neighbors and colleagues when she told them of my encephalitis hospitalization. You’ve probably heard or said it in your encounters with illness, too.
Well, in this time where teamwork within and across communities is needed more than ever, mask up!
Keep your physical distance!
Wash your hands!
Don’t be the person who offers empty pleasantries to your social circle, then sidesteps social courtesy at the hint of personal inconvenience. This time ’round, with COVID-19 spreading rapidly, your personal choices are the difference between life, death or contributing to years of someone struggling with chronic illness.
The coronavirus is not just impacting the elderly, immunocompromised or those with underlying health conditions. Dismiss it and you’re spinning a dangerous roulette wheel, with little assurance of keeping the healthy people you love out of harm’s way.
Imagine watching your brother, who was always at the gym, barely able to make it up his flight of apartment stairs. Or your smart kid drop out of school, losing their spot in a prestigious degree program they worked so hard to get into. Or your young partner gives up their stable job because they can no longer access their keen intellect. Especially in a scenario where these outcomes are largely preventable—like they are now—you’d probably be indignant.
The reality is that the risk of disastrous, life-altering consequences escalates each day we ignore the insidious nature of COVID-19.
So respect your body, and respect others. Wash your hands, watch your distance and wear a mask. Especially the last one. Unless a health condition prevents you from being able to do so, please wear a mask! Even if you’re asymptomatic, you can still spread the virus (Science Magazine).
Short of strict self-quarantine, wearing a mask has proven to be the most effective precaution we know in reducing coronavirus transmission (UCSF). A recent analysis found that “in countries with cultural norms or government policies supporting public mask-wearing, per-capita coronavirus mortality increased on average by just 8.0 percent each week, as compared with 54 percent each week in remaining countries.” Think of the tens of thousands more that could be spared from developing chronic health problems.
To conclude, I hope you’ll decide to play the long game with me—not the short one. Like it or not, we’re fighting the coronavirus together.
Follow this journey on Where Are My Pillows
Getty image by Ksenia Zvezdina