I Have a Rare Disease That Makes Me See Demon Faces Everywhere. It’s, Uh, Not Fun.

In What It’s Like, people tell us, well, what it’s like to have experiences many of us have not even imagined. In this entry, we spoke to Maggie McCart, an administrative assistant at an Illinois university, who suffers from an extremely rare disease called prosopometamorphopsia, which inflicts patients with a variety of wild hallucinations when they look at someone’s face. If you were to look through McCart’s eyes, you’d experience a world where faces appear to be made of tree bark, or are unnaturally contorted, or, perhaps, completely swapped out with a mythical creature. We asked McCart how she manages to live life while looking through a fun-house mirror.

I have always struggled to recognize people’s faces. Sometimes, even my own face. It’s been happening for as long as I can remember. It wasn’t like I just woke up being face blind. As a kid, I remember being at the mall, staring into a mirror with a bunch of friends, and not being able to identify which reflection was my own. As I grew older, the problem got worse. Sometimes, a person might look exactly like someone I used to know, maybe even someone I haven’t seen in over a decade. Say I’m riding the bus and looking out the window. There, on the street, will be a girl I went to school with in third grade. Except it’s not them—they just happen to be wearing their face.

Other times, these disorders can get truly bizarre and hallucinogenic, like a bad acid trip. The skin texture on a face can change, or their noses or eyes seem to be stretched and exaggerated in grotesque, plastic-y ways. Sometimes a person’s face and mouth are replaced by geometric shapes—triangles, hexagons, and so on. When that happens, I call it “going Picasso” because they remind me of his cubist paintings. I’ve had faces appear to be made of potato skin, or tree bark, like the talking apple trees in Wizard of Oz. And I’ll never forget that time I looked at a manager, and he gazed back at me with—no joke—the head of a dragon, complete with matte, black skin. (Thankfully, that distortion has only happened once.) The condition I’m suffering from is called “prosopometamorphopsia” (I know—I can barely pronounce it myself). Those who have it sometimes experience bizarre visual hallucinations when they look at someone’s face. It’s extremely rare—there have been only 75 cases ever reported, and I’m one of the unlucky ones.

Prosopometamorphopsia is sometimes referred to as “demon face syndrome.” Nobody knows what causes it—generally the disorder is linked with various brain traumas—and for a long time, I couldn’t get a diagnosis myself. My early interactions with doctors weren’t helpful. Years ago, I explained my symptoms to a neurologist. I reported what I was seeing, and they scanned my brain and didn’t find anything suspicious. The neurologist said something like, “Well, there’s nothing wrong with your brain.” And I thought, “I beg to differ.” But again, it’s not like they can see through my eyes. It’s not a simple situation, like asking a doctor to investigate a rash on your skin.

So for most of my life, I did my best to ignore the symptoms and go about my day. I learned to recognize people by their shoes, or their clothes, or the way they walked. When I’d go on trips with friends and I’d get separated from them, I’d stay where I was and wait for them to find me—rather than walking off with someone who simply looks like them. I could manage. But my prosopometamorphopsia became an issue at an old job at an AV company, which was filled with a bunch of men in their 20s, who—to me—all blended together. I’d think I was talking to Tim, when really I was talking to Joey. So I visited an ophthalmologist, who treats vision conditions, and they basically told me that these problems were all just a result of trauma, and because of a rough childhood, I struggled to look people in the eye. That was true. I do struggle to look people in the eye. But when I did, in the past, I could count on at least seeing someone’s actual face. 

Thankfully, my sister, who works as a biologist, was the person to tell me that I might be dealing with a more significant glitch in my brain. We went down the rabbit hole of prosopometamorphopsia together, which is how I first came into contact with Brad Duchaine. Duchaine studies brain science at Dartmouth and has done a lot of work on my specific ailment. On our first call, he said, “What are your symptoms, what are you going through?” Duchaine was the first person I ever told about the dragon thing. It’s not something that comes up in polite conversation, and I know that it might make me sound like I’m on drugs. But he said, “Yeah, that happens.” I no longer felt alone. I was like, “Wait, other people deal with this, too?”

We’ve been working together since 2022. He’ll send me pictures that I’ll look at, and he’ll ask me how they appear to me, and he’ll compare that to other people who have prosopometamorphopsia. He’ll have his research assistants make certain faces, or turn a certain way, and I’ll let them know if they’re distorted to me. It’s so hard to describe exactly how these hallucinations appear, but sometimes it can feel like my brain displaces my inner thoughts into my visual field. For instance, one time I was going to see a doctor and when I looked at his photo, he reminded me of Mr. Weatherbee, from Archie Comics. After entering his office, his head was replaced with the cartoon visage of Mr. Weatherbee, animating against the background.

I’ve never been able to determine the cause of my prosopometamorphopsia, and it doesn’t kick in with every face I see. I did get diagnosed with autism a few years back, and Duchaine has told me that the disorder can be a side effect. There is also what I like to call the Sulfa Incident. Years ago, to treat a weird cyst on my leg, I was diagnosed with a sulfa antibiotic that my body reacted poorly to, and I was later told that I might have a sulfa allergy. The point is, afterward, my prosopometamorphopsia was further exacerbated—beyond face blindness and toward “Why does that person have a hexagon over their nose?” I’ve come up with some ways to alleviate those symptoms. Sometimes sitting down and drawing simple doodles of human faces helps me, like a way to remind myself what people look like.

But you know what? At this point, the distorted faces I see don’t scare me anymore. I’m used to it. I’ve made peace with it. Yes, when I first saw that dragon it was truly terrifying. Stuff like that would make me gasp. But now I’m able to relax, take a deep breath, remember that it’s just my stupid brain acting up. People don’t look like dragons, and thank God for that.