A guide to assessing risk during a pandemic, as told by someone who IS high-risk
A friend recently told me: “I wish there was an article I could share that was called ‘Staci’s guide to assessing risk during the pandemic.’” Or rather, she texted this to me, as this is the primary way we’re all communicating these days. “You’ve written something like this before, I feel like,” she said. And that’s true; I’ve been writing quite a bit about having an autoimmune condition and negotiating an international pandemic but a lot of these things were early on, when we were just adjusting to this new reality. But, as it increasingly looks like we’re in it for the long haul, I wanted to revisit some of my advice. That said, my advice might make some of you uncomfortable. That’s because navigating something this huge, something for which the official advice shifts on a weekly and daily basis, is tricky. Without consistent government guidance, we must constantly ask ourselves: what’s the right thing to do, the right way to protect myself, my family, my country?
And, I’m by no means an expert. What I am, though, is someone who has spent years thinking about what it means to coexist with the constant threat of death. And I can’t tell you what the right thing to do is. But I can tell you what I’ve done, why it was harmful, and what I do now. For that, we need to go back to the summer of 2015.
That summer was pretty good, overall. My boyfriend had gotten an internship in San Francisco and I had just defended my prospectus and was ready to embark on the next stage of the dissertation process: writing my first chapter. And, lucky me, I could do this anywhere. So, I flew out to the Bay Area and joined Joe and two of his classmates in a shared sublet in Oakland, California. The three of them made the commute to the city each day and I stayed behind, researching, writing, and running. My mornings followed the same calming, dependable rhythm: wake up, write 500 words, go for a long run, shower, research by the pool so I’d be ready to write again the next day, repeat. I had three goals for the summer: finish that first chapter, get in great running shape, and return to New York with a golden tan.
If you know me, you know I’m great at sticking to plans. And it all went well. By the end of the summer, I was eagerly awaiting comments from my advisor on that first chapter. I could now run eight miles. My tan lines were to die for.
But, it was also becoming clear that something was going wrong. My feet were in excruciating pain every morning. It was all I could do to limp to the medicine cabinet to fetch the Ibuprofen. Red, raised bumps were starting to appear on my upper arms. The skin underneath my chin was perpetually blotchy. Little did I know, if you have a predisposition for something like lupus, constant exposure to sun and stress can cause irreparable damage to your immune system.
By the time I had returned to Syracuse for the fall semester, the blotchiness had spread to my cheeks. The bumps on my arms, which usually would fade, seemed to be permanently affixed.
I made an appointment with a rheumatologist. They ran a battery of tests and told me that results would be in in about three weeks and we’d meet again then. Maybe arthritis, maybe lupus, maybe Lyme’s, who knows. Let’s wait and see.
In the meantime, I went down a hole of WebMD research. My search history was filled with gruesome images of rashes. I was documenting all of the possible symptoms and what they could mean. When I should have been writing, I was spending hours obsessing, worrying.
After about a week, the results came back. I saw them in the system and, next to almost every blood result, an angry red exclamation point flashed. I left a message for the doctor, demanding to be seen sooner. While I waited for them to call me back, I Googled each and every blood test result, learning what the variance in numbers meant. What did it mean that my white blood cell count was high? That my C3 complements were out of whack? That my double-stranded DNA numbers were 800 counts above the normal range?
After reviewing my results, the doctor quickly rushed me into the office and soon confirmed: it was a pretty textbook case of systemic lupus erythematosus (SLE): lupus.
I now had a diagnosis, for which I was super grateful. It often takes women months, years, decades to get diagnoses, especially for autoimmune conditions. And, with that diagnosis, I had a clear task: learn to keep myself safe.
Luckily, I was a good researcher. I’d been doing it all summer. Those first few months, I very carefully tracked my health, paying attention to every single new symptom, learning what it could mean. I kept a careful eye on my bloodwork, Googling any new changes.
Most daunting of all, I meticulously researched all of my medications and, of course, their side effects.
There are two main drugs I am on: Plaquenil (hydroxychloroquine) and Cellcept (mycophenolate mofetil). Plaquenil is one of the baseline drugs that I’ll be on forever, as long as my body allows. It’s an antimalarial, which means it tricks my body into thinking I have malaria so that, instead of my immune system destroying itself, it fixates on the fake malaria. It’s pretty effective. But, it comes with one major downside: it is widely known to cause retinal toxicity and blindness. But, my doctor says, it’s worth the risk. Without it, you could die. So, I accept this truth and I go in for annual eye screenings.
Cellcept, though, this is a whole other beast. This drug is typically taken by kidney transplant patients for short periods of time. They take it so that their immune system won’t reject their new kidney. I take it so that my lupus will stop attacking my kidneys. I’ve been on it for 5 years now. We keep trying to wean me off, but my body still seems to require it for stability. The first time I filled my prescription for it, it came with a 30 page booklet, filled with 8x10 pages with tiny margins and even tinier print. One by one, it listed the dangers of the drug. There’s the normal ones: nausea, vomiting, anemia, etc. Then, there are the scary ones: greater risk for pulmonary fibrosis, lymphoma, melanoma, pure red cell aplasia, etc. Then, I get to this part: some patients have developed a super rare neurological disease while on Cellcept, a viral infection that attacks the brain and is fatal. All these potential symptoms aside, the biggest risk concerns pregnancy. If you are to get pregnant while on Cellcept, your child will have massive congenital defects. So, avoid pregnancy. Got it. But, it’s important to do your research: women with lupus shouldn’t be on the pill due to increased likelihood of blood clots. So, it was time for an IUD, which is a saga for another day.
While the amount of information I had to sift to in order to make sure I was making smart choices was daunting, it was manageable. It was also necessary to keep me alive. But, at one point, I began to take it a bit too far. Per the advice of a self-help blog, I ordered up the official “how-to” guide for lupus. The book is designed for you to read it slowly over the course of the year as you adjust to your diagnosis. But, I was eager to know everything. To beat this. So, I read it all in one day. It was chock full of advice. When to avoid the sun, which foods to avoid, how to plan a living will, how to manage stress, how to plan a pregnancy, how to handle sleep disorders, how to sort out overlapping symptoms. How to accept that this might kill you, despite all your work. Every chapter I read, I began to feel more hopeless. This wasn’t about beating lupus. This was about simultaneously trying to avoid while planning for my own death. The more I learned, the more my demise felt more and more inevitable. I was filled with constant dread and anxiety. I wrote to the free legal counsel on campus to look into drawing up a will. I wrote up a list of all the medications I was on and slipped it into my wallet. The more information I learned, the closer I felt to death. It seemed like, with all these symptoms and risks piling up, there was very little chance of surviving this.
Not long after reading this trusty manual (which I’ve literally never opened again except to consult for this post), I eased up on my research a bit. At some point, it was doing me more harm that it was good to continue to venture down these rabbit holes. I’m not saying that I stopped trusting the science. I did. I trusted it deeply. But, I was also learning to trust myself. At this point, I knew enough to make good decisions and to keep myself healthy without having to obsess over the exact minutia of what the best thing to do would be. Yes, per my doctor’s advice, I’ve stayed on all of my medications, and we carefully monitor my progress together. But, I stopped completely avoiding the sun between the hours of 10 and 2. If I want to go out, I go out. I slather up in sunscreen but I go out. If there happened to be garlic in a meal, I won’t refuse it. I’ll just be modest in my consumption. I’ll still go on runs, but maybe I’ll avoid the super strenuous ones. I found that it was necessary to make some compromises if I was going to have a shot of living, actually living, with this disease.
All this is to say: it’s important to have balance. You can spend your time researching a topic to death, to understand the exact right thing to do at any given moment. You can allow yourself to get paralyzed by fear. Or, you can learn, be open to perspectives, and allow for a fluidity of choices and outcomes. At some point, you also have to pay attention to your mental health in addition to your physical health, and learn to make compromises where you can if you want a pathway forward. If you’re in something for the long haul, you need to pace yourself.
Let me be very clear: this is not an argument to ditch your mask (please God, wear your mask). It’s not an argument for going to dine-in restaurants (takeout seems good?). It’s not an argument for going to that big family barbeque (maybe just invite a few people over, and stay a safe distance from each other?). Rather, I’m just encouraging you to give yourself grace. To stay informed, to make smart choices, and know you’re doing your best. I’m saying: sometimes it’s okay to not read every news article, to not catalogue every shift in CDC opinion, to turn off push notifications, to go for a walk outside, to assess the risks and act wisely.
Depending on who you are and what you need, this might mean you take bigger risks than other people. Maybe you live alone and have been shut in for months, so you were one of the early ones to do a backyard “social distance hang.” Maybe you needed to see your therapist in person, so you did. Maybe you needed to go to the doctor for a non-COVID-related-issue, so you went. Maybe you’re a working parent and made the decision to send your kid back to daycare. Maybe you’re high risk like me, so you limit yourself to essential trips but still go on walks and get takeout. None of this means you’re a bad person. It means you’ve found a way to keep yourself alive while still finding a sustainable way to live. And that’s okay.
This feels like a potentially dicey proposal, one that’s sure to get me some flack, but if you want “Staci’s guide to assessing risk during the pandemic,” it’s this: Please be mindful of science. But sometimes, it’s okay to stop researching. It’s okay to live.
