My weird saga with dermatographia. Once considered a sign of witchcraft and “Satan’s Stigmata,” we now know better. Sort of.

This essay was published in the fall issue of print journal The Quarterly, in their “Weirder Still” edition, with PDF versions available for purchase.

(Below it, a photo and an update.)

Satan’s Stigmata

By Joy Victory

I am leaning over a store checkout stand looking at the cashier’s screen when I feel a familiar prickle in the center of my back. Once again I have somehow angered my skin, which for more than a year has been easily provoked from things like slight pressure, light scratching, and rubbing. I can’t overcome the instinctive urge to scratch, not even here today at Goodwill, where I’m buying a used vase I’ll regret later and peering at a blurry monitor to confirm my phone number is correct.

As I lean further, my bra strap shifts over the blooming welts. Without any conscious awareness that I am doing so, I reach my arm around, lift my shirt up, and shove my hand under the strap. I can’t quite reach the itch, so I arch my back while leaning. At this point, a full two-thirds of my back is exposed and I’m draped over the counter like a middle-aged starlet, albeit one who shops at thrift stores. I don’t realize how ridiculous I look. I’m multitasking with a raging case of hives, after all.

Someone else has noticed, though. A male-throated murmur that can only be interpreted as “ooh, exposed female skin” rumbles behind me. “Mmm-hmmm,” he coos at a volume only I can hear. “Good morning, mama. Lookin’ good!”

Humiliated, I whip my hand out and yank my shirt down. I do not look behind me to see how many people are waiting and just got a free show. I am red enough already.

My primary care doctor, my dermatologist, and my allergist all blame my new itch on the same thing: inducible dermatographic urticaria, or “skin writing” hives. And writing is indeed a thing I can literally do on my skin using my fingernails, crafting bumpy pink-hued artworks on my arms and legs when I’m bored (or wanting to impress someone with my weird new party trick, as I did with one doctor). Words, faces, shapes–I’ve drawn them all, usually on my thigh, my largest and most accessible dermal canvas.

Of course, “writing” on my skin makes me itch, but there’s something about being in control of them that makes them feel less agonizing. I’ve had to begrudgingly adjust in myriad tiny ways, like making multiple trips to Goodwill to buy loose-fitting garments that don’t cling to my skin, or knocking back six to seven cups of coffee a day to deal with the hangover from antihistamines, drugs that aren’t even that effective. Worst of all, I can’t be manhandled like a normal woman. Each time my husband reaches out to me, I remind him to touch me like he would a snarling feral cat–as gently as possible.

All of this, as you can imagine, has affected my mood. I’m itchy, I’m sleepy, and I’m annoyed by meaningful human touch.

Hives can manifest in a lot of different ways and have numerous triggers. I was surprised to discover that dermatographia is one of the more common types of hives, affecting about 2-5% of people. I had never heard of it until I was Googling things like “am I allergic to my fingernails?” after I realized the wheals were often in the precise shape of my scratching.

Among other potential causes, infections, vaccines, and medications (penicillin being a biggie) are all linked to it. For me, the one thing that stands out in my otherwise unremarkable medical history is uncanny timing. Five days after I got my COVID booster–which caused my arm, breast and corresponding lymph nodes to swell and ache for a week–the hives arrived and they haven’t left. All three of my doctors have had other patients who developed post-vaccination dermatographism, and the topic itself has made the rounds in medical circles¹. But, according to my dermatologist, I’m apparently the rare patient of hers who still battles hives, far longer than most. Why? No one knows, but I like to think it’s because I have a super-powerful immune system. That, at least, is a good thing, as long as it doesn’t cause a full-blown systemic autoimmune disorder, which can happen, especially for women.

I wish I could say I’ve learned a lot from feeling itchy all the time, but like so many health conditions, it’s hard to find an upside other than learning to tolerate a new type of suffering. For the first time, I have a chronic health problem that’s visible. When, say, I’ve got bright red sashes of inflammation across my neck and chest–thanks, cheap necklace–I get funny looks. “It’s just a skin allergy,” I say to people who recoil, unable to make eye contact, perhaps because they think I’ve been fighting a tiger, or, at the very least, a large cactus. Skin is special that way. Our deeply human need to be with other people means we can overlook a runny nose or broken arm, but not a massive skin rash. No way. That’s too primal, as if fear of diseases like smallpox is encoded in our genes and expresses itself in a unique form of disgust.

Which makes me wonder: If given the choice between frequent-but-invisible itchiness or visible-but-itch-free hives, which would I choose? Hidden personal agony or itch-free social shunning? It’s an interesting quandary to ponder, one that has given me renewed respect for people with chronic illness, visible and hidden. Both suck in their own ways.

There’s also the depressing and lonely reality of having experienced a vaccine side effect in a politically divided world. I don’t want anti-vaxxers to latch onto my story as proof the vaccine is harmful, but at the same time, if people like me don’t speak out, the science suffers. We all deserve to know the benefits and risks of medical interventions without either of those things being turned into political talking points.

Still, as frustrating as all that is, it could be a lot worse. In centuries past, not only would I have lacked medication to keep my hives under control, I likely would have been living out an episode of “American Horror Story.” Think about it: Dermatographia means a person (usually a woman) can write things on her skin (and have things written on her skin by other people). That’s spooky, like invisible ink conjured by witchcraft.

At our best moments in history, we “skin writers” were objects of fascination, even making a living on freak show circuits. At worst, we endured torture in the name of research, with misogynistic doctors hell-bent on figuring out if we were spiritually haunted “mediums” with the powers of the occult, or if we were merely suffering from hysteria, a catch-all label for all kinds of conditions, some real, some not.

Consider the physicians at Salpêtrière, a French teaching hospital that’s still in operation. According to records from the mid-1850s, doctors would scrape words on their female dermatographia patients and photograph them using cancer-causing radiological material.² In at least one horrible case, a woman who refused to undergo the experimentation was held down and subjected to hot pokers placed on her lady parts. Yes.

This extreme vitriol was a relic of the medieval belief that skin writing was not an allergy but rather “diabolical dermatology.”³ Back then, for example, if you had slapped my back and the shape of your hand appeared, it was definitive proof that the devil had “marked his own,” also known as “Satan’s stigmata.” While I do often feel possessed by a fleet of tiny demons poking pitchforks into my skin, I am (fairly) certain Satan isn’t running the show. Regardless, off to the criminal sanatorium I would have gone.

My modern-day reality, as itchy as it is, is cupcakes and unicorns in comparison. Still, I’m sick and tired of it, and so have embarked on a last-ditch effort to find relief in the form of an injectable drug called Xolair. It’s the “big gun” in an allergist’s armament, because it modulates the immune system itself, rather than merely fighting back histamine. The downside? It (paradoxically) carries the rare risk of a severe allergic reaction, so I am now the proud owner of an EpiPen self-injector. My favorite part? Being warned that a sign of imminent anaphylaxis is hives. Oh.

After my first injection, I had to wait two hours at the doctor’s office to make sure I didn’t keel over. It’s fair to say I was a little hysterical, monitoring every little change in my body: Was I feeling a little lightheaded? Shallow of breath? Even more hive-y than normal? I constantly scanned the other people in the waiting room, most of them staring at their phones or filling out forms. If I passed out, would they even notice?

Fortunately, it all went fine, and I await more shots in the next few months. So far, my hives are the same, but I’m starting to wonder, if they do go away, will I miss them? If viewed the right way, they’re almost a superpower. And the party tricks! Can’t forget those.

Sources:

My thigh with dermatographia after COVID booster

MY SKIN after light scratching, before I started Xolair. Yes, this is from light scratching.

Gratefully, my condition is now controlled by the Xolair injections! With no anaphylaxis! At some point, I may be able to taper off and stop taking it, but for now, I’m grateful just to have normal, non-reactive skin again.

Joy Victory