Scabies Taught Me Social Distancing Doesn’t Mean Disconnection

I wasn’t alone in this experience that had made me feel so isolated, so removed from everyone.

In the summer of 2017, after months of a maddening itch that drove me to several confounded doctors who excised biopsies and suggested various creams and ointments, I was diagnosed with scabies. (Microscopic mites that build a home in your skin and make every waking moment torture. Having them is somehow even more disgusting and painful than it sounds.)

The diagnosis was just the latest in a year of order-disrupting events, from the end of my long-term relationship, to the end of my job, to a cross-country move undertaken alone. Paired with months of a full-body itch that made sleep impossible, my life seemed comically determined not to go according to plan. Everything felt terrible and uncertain.

Scabies is awful for anyone, but it seemed particularly attuned to my idiosyncrasies. Not only was I just beginning to get over a traumatizing experience with bedbugs, but I also have obsessive-compulsive disorder. My OCD focuses on fears of contamination. In times of stress, my brain, seeking a sense of order and control, asks: which surfaces are safe to touch, and which ones aren’t? That summer, terrified of accidentally re-infesting myself with scabies, everything felt unsafe, so I touched as little as possible. Particularly people.

I withdrew from the world. Paranoid that I might spread my scabies, I didn’t hug or shake hands. I also didn’t want anyone to see what a mess I was. So I spent most of my time alone, walking the dog for hours or whatever else I could do to pass time and get through this period of intense isolation.

I never expected to relive that summer. But now, in 2020, as the Covid-19 crisis requires many of us to withdraw from the world, I’ve found myself once again fixating on what surfaces are safe to touch, walking the dog for hours, and forgoing hugs and handshakes. I feel transported back to a period I’d rather forget. But I also feel prepared this time around because of what I learned that summer.

Three years ago, months before my scabies diagnosis, I was added to a direct message chat full of Twitter shitposters after one of my silly tweets went viral. It started as a low stakes chat for cracking jokes and talking shit. But to my surprise, by the time of my diagnosis, it had become a radically intimate space.

In my most isolated moments, I didn’t want to risk what little energy I had on trying and failing to reach out to someone. But I knew there was almost always someone in the chat who would answer me right away. It was more than convenience, though. There was also something about the quasi-anonymity of this group of mostly strangers that enabled me, and all of us, to open up in unexpectedly vulnerable ways.

But to my surprise, by the time of my diagnosis, it had become a radically intimate space.

The impact was profound. Feeling completely hopeless after one terrible night tossing and turning with socks over my hands to prevent me from digging my fingernails into my back, I opened my Twitter app. Barely able to summon the basic determination required to type out a few words, I whimpered into the void of the chat. With great tenderness, this group of shitposters with cartoon avatars and display names based on impenetrable references told me it was okay to feel lost and hopeless, but also that I would get through it—and that they would be there to ensure I did.

It wasn’t just digital strangers, either. I also spent hours on the phone with a couple of close friends, including my friend Alex. He and I had met many years earlier while living in Chicago. Our connection was intimate and immediate, but within a couple years, I left for New England, so the majority of our friendship had happened from a distance. The years that followed found us gradually drifting apart as we sent increasingly infrequent text updates and occasionally caught up on the phone. But that summer we grew closer than I could ever have imagined.

One hot afternoon, after he asked how I was and if I needed someone to talk to, I paced back and forth on the phone for hours, explaining how terrible my scabies experience had been. He listened with near-reverence as I cried about how solitary and destabilizing it felt. Then, in a voice uncharacteristically quiet for him, he opened up about his own devastating experience with scabies. I was stunned by how similarly consuming his scabies nightmare had been and how, despite our close friendship, I hadn’t known about it.

While my heart broke for him, as his voice carried across the country and into my ear, I could feel my shame fall away like a snake shedding its skin in the way I wished I could shed my own. I wasn’t alone in this experience that had made me feel so isolated, so removed from everyone. Even though he lived across the country, he was there for me, day after day that summer, walking me back into the light. In this shared struggle over the phone, he and I became closer than we’d ever been, even when we’d lived just miles apart. That summer changed the course of our friendship forever, bonding us to a degree I’ve rarely experienced at all, through technology or otherwise.

Alex died by suicide in December, crossing a threshold even technology can’t bridge. It is incomprehensible to me now, the immensity of his absence. It comes to me in sharp waves, ones that make me feel as lost and disconnected as I did that summer. But when it does, I look at the texts Alex sent me in those dark months, years ago. He is still there, in the words on my screen, encouraging me to keep going.

*

For much of my adulthood, I’ve suspected that the things I do on my phone or computer, and the connections I make and sustain through them, aren’t real—or are at least less real than the parts of my life that exist offline. This suspicion was informed by the polemics of digital life, the naysayers who claim that the internet makes us more shallow, more anxious, less connected.

But that suspicion, that the digital is less real than the analog, has become harder to maintain over the years, as ever-more important pieces of my life—all of our lives, the ways we connect, express ourselves, process events, and map our identities—have moved online. And though I couldn’t see it at the time, it came undone that summer my phone kept me connected, kept me alive.

Whatever you think about our imperfect digital lives and how they compare to the offline ways we connect, we would be better off treating both the digital and the analog as real spaces where we can forge meaning and connection—things we need right now, in a time of physical distance.

Yes, there are real differences between the ways we can connect online and off. But I suspect that part of why our digital lives sometimes feel unfulfilling is because we often project our offline expectations on to them, presuming they will replicate an offline experience instead of offering something distinct. We’ll continue to feel something is amiss online if we expect it to connect us in familiar ways or use it mindlessly.

Mindless use of online spaces can easily emerge from anxiety, and we live in anxious times. While working on my book IRL, which explores what digital life reveals about what it means to be human, I interviewed a dermatologist. Though I was there to talk to her about scabies, what I really wanted to understand was the role anxiety plays in driving our actions, online and off.

The dermatologist explained that one of the biggest challenges of scabies is the uncertainty that comes along with it—that you don’t know at first if the treatment has worked. This is why scabies is so difficult for many, and certainly why it was for me. OCD is all about trying to wrest yourself of uncertainty; about wanting to feel safe, secure, certain. But scabies and its treatment protocol are defined by uncertainty. The only way through is to learn how to sit in the unknown.

The only way through is to learn how to sit in the unknown.

The unknowns of this moment feel similarly overwhelming. When will the pandemic be over? Will it be over? Are our loved ones going to be okay? How will I work now? How will I pay my rent next month? How will I buy groceries tomorrow? I feel the precariousness of these questions in so many pieces of my own life, and see them all over my Twitter feed.

Uncertainty is immensely difficult to endure. But we will never be rid of it because life is uncertain. While a necessary skill, learning to live with it is hard to do on our own, as I was reminded that summer. Which is why, when facing the unpredictable and unknowable, we must help one another keep going.

*

In the first week of the pandemic, I found myself reverting to my initial post-scabies isolation. Instead of reaching out to loved ones, I once again withdrew from the world. But then I remembered what helped me connect before: my digital life. In the time since, I’ve arranged to watch Tiger King simultaneously with a friend so that we could text our reactions to one another, FaceTimed and Zoomed with loved ones, and tried things I wanted to roll my eyes at, like the app Marco Polo or Netflix Party. Hell, I even went on a date in Animal Crossing. (Much cuter than you might think!)

None of these things are inferior to the offline versions of these experiences. I don’t see them as caricatures or shadows of things more “real.” Everything may feel terrible and uncertain right now, as it did for me that summer, but the very real digital connections we establish in this moment can help us persevere. In their newness, the digital pieces of our lives might also teach us new things about what it means to be human.

They are not the same as other parts of our lives, yes, but not only in the sense that sometimes they offer less. They can also offer more; a chance to go back to the drawing board and re-approach age-old questions of how to connect and express ourselves. To ask ourselves what we need from one another, and find new ways to locate it.

Through our phones and computers, we can attempt novel ways of being and belonging that, if we give them a chance, might surprise us in their power and realness. These unprecedented ways of being human may even help us connect more deeply with ourselves and one another than we have before—as I did a couple of years ago with a longtime friend and a group of shitposting strangers—in a time when we really need connection.

So disregard the voices who have said with certainty that our digital lives are fake. They can be as real as we allow them to be, and right now, we really need them.