The first tattooed person I ever knew was Misha, my mom’s first boyfriend in the US. She didn’t call him that yet, but I knew that that’s what he’d become as soon as he stepped into our studio apartment, helping her carry a tall, leafy houseplant. My mom’s new female friend was also with them; together, they came from the language course all adults had to take to receive financial assistance. Immigration briefly leveled the playing field between me and my mom. I studied English in my fifth-grade ESL class and she studied it in the evening. It only took a few months for me to pull ahead of her.
“How do you like our million-dollar view?” my mom waved to our visitors.
Through the windows you could see a far-off, miniature Golden Gate Bridge, as if shrunken to fit the frame. It was our sliver of luxury in this dingy apartment, where we ate buckwheat kasha brought over from Ukraine because we didn’t know if we’d be able to afford American groceries.
While all three chatted and joked about their teacher, I pretended to play with my toys, observing from the sidelines. The woman wore a velour tracksuit, which, this early after our immigration, I considered the epitome of style. The man’s clothing didn’t make an impression either way. He was congenial, which was a plus. But he was shorter than my mom, which was a minus, though not a dealbreaker. He was a Russian-Jewish greenhorn like us, which wasn’t helpful in our project to become Americans but was hardly surprising. I would’ve tuned them out, playing with the doll I chose at Toys”R”Us for my tenth birthday just days after arriving in the US if my eyes hadn’t landed on Misha’s forearm. A real-life tattoo—somewhat faded, somewhat covered by hair, but undeniable. In Soviet Ukraine, I only saw them in movies and always on sailors or criminals and I had no reason to think Misha was a sailor. Squinting, I could tell his tattoo was religious, a Virgin Mary. Was she holding a child? I shuddered. Why would this Soviet Jew have a mark on his body? Why would it be Christian? None of it made sense. I wanted to look closer, but I also never wanted to see him again.
Look and not look—this was my pattern when it came to Misha’s tattoos for the years he lived with us. It wasn’t just that I found his markings offensive; I winced at the pain they suggested, unbearable to my young mind. Though he and my mom argued a lot, he was kind to me, and we became close. Still, I never asked him the story of his tattoos. I simply knew this was not done. So, I snuck glimpses, the way one does with something curious and disturbing. Religious symbols were like islands on his upper body; I tried to connect them but couldn’t. There were many crosses and, on one of his pecs, a large Russian Orthodox church with its iconic onion domes. I liked Misha, so I accepted his tattoos, but if I could have had it my way, I would’ve erased them all.
Three years ago, I was in the midst of the longest and most dangerous lupus flare of my life. I’d been living with the chronic illness for about ten years. Periodic flares were part of the deal, but this was different. My immune system was attacking my body from a dozen different directions. I had rashes. My feet went permanently numb but my joints were on fire. Walking a flight of stairs was painful. Typing was painful. Wearing clothes, sitting in a chair, lying in bed—all of it was torment.
To distract myself from the near-constant sensory distress, I started looking at tattoo images online. It was something to fixate on, the right activity for a person in the thick of brain fog. But the more I looked, the more I found myself justifying. My decade anniversary of living with lupus was coming up and I wanted to commemorate it. I felt an urge to make visible to others, albeit only symbolically, my largely invisible experience. With lupus, the signs are often subtle. Though the disease has the potential to cause inflammation in any organ, including the skin, much of the damage happens behind that barrier: in the kidneys, brain, heart. I could see the traces of my disease, some temporary (rashes, swelling), some permanent (twisted knuckles, discolored skin), but I knew what to look for. I hid whatever I could.
There were many benefits to having a so-called invisible illness, but it also meant others assumed I could lift heavy objects, eat, sleep, and work without discomfort, and generally go about my day without worrying about staying alive. The years of hiding had begun to wear on me.
We’re social creatures and being in pain is often isolating. For people with autoimmune diseases, especially women, especially women of color, invalidation is at every turn in our healthcare system. “We don’t know why you’re in pain,” “This pain is not typical of lupus,” and “I know you’re suffering but your labs look stable” are all statements I’ve heard from doctors, over and over again. In my private life, I became accustomed to even friends and family members saying, “I had no idea you were going through all this,” though it never ceased to make me feel unseen, alone, and mad. The tattoo, then, would be a reminder, a visible marker of pain.
From the start I knew I wanted an image of a wolf on my forearm, forgetting then that this was the location of Misha’s Virgin Mary tattoo. Lupus is Latin for wolf, and according to the literature, the illness was named after a twelfth-century account that the skin sores associated with the disease look “as if a hungry wolf eats his own flesh.” This grotesque image has haunted me from the moment I encountered it, heightening my shame at having a body intent on destroying itself, my disgust at the visible signs. To brand myself with something I feared and sought to subdue seemed like a reclamation. I didn’t want to romanticize the disease, but to acknowledge that it was with me, and that together we had found a way to coexist, however turbulently. The tattoo would represent this permanence. The wolf would be drawn in a single black line, to symbolize the continuity and abstractness of my chronic but shapeshifting disease.
“That looks really cool,” the artist said, admiring the mockup on my arm. He stood behind me as I looked at myself in the mirror. I couldn’t have felt less cool or out of place. We were on vacation in LA and I impulse-scheduled the appointment at a nearby studio. This was in hipster Highland Park, a white-walled space—more art gallery than the hippie or rockabilly parlors of Haight Street where my friends used to get inked. Everyone in this aggressively air-conditioned, sterile haven had multiple tattoos; I was the uninitiated one, to be handled with more care than I’m used to getting from doctors and nurses. I caught my partner’s eye in the mirror and smiled to telegraph my awkwardness, then looked again at the design. The wolf reflected back to me was now on my bicep. The artist’s drawing looked better there and I could see the benefit of a less visible spot—no unwanted questions from my students or immigrant relatives. I could choose when to let the wolf see the light of day and when to keep it inside.
Lying on the leather table, I looked and looked away as the artist conjured the wolf, each stabbing a point in the thread. In the few days leading up to the appointment, I had badgered my partner and friends: “How bad will the pain be? Am I going to chicken out?” A friend familiar with my health problems said, “You’re sticking a needle into your flesh; it’s going to hurt. But you know pain.” Did I know pain? I certainly experienced it daily. I documented it in my symptoms diary, in my countless emails with doctors, and in my essays. I read books and articles and testimonials about pain—how it works, whose pain is taken seriously, why the pain scale is so limiting. I approached the subject with more dedication than I applied to my dissertation research and in the process learned that, in many ways, we barely know what pain is and what it takes to understand the pain of others.