What it’s like to have a rare disease.

In What does it look like, people tell us, well, what it’s like to have experiences that many of us haven’t even imagined. In this article, we spoke to Maggie McCart, an administrative assistant at a university in Illinois, who suffers from an extremely rare condition called prosopometamorphopsia, which inflicts patients with various wild hallucinations when they look at someone’s face. If you looked through McCart’s eyes, you would discover a world where faces appear to be made of tree bark, or are unnaturally distorted, or, perhaps, completely replaced by a mythical creature. We asked McCart how she manages to live her life looking through a funny looking glass.

I’ve always had trouble recognizing people’s faces. Sometimes even my own confront. This has been happening for as long as I can remember. It wasn’t like I just woke up blind. When I was a kid, I remember being at the mall, looking in the mirror with a group of friends, and not being able to identify which reflection was mine. As I got older, the problem got worse. Sometimes a person might look exactly like someone I knew, maybe even someone I haven’t seen in over a decade. Let’s say I’m riding the bus and I look out the window. There, on the street, there will be a girl I went to school with in third grade. Except it’s not them, they’re just wearing their faces.

Other times, these disorders can get really weird and hallucinogenic, like a bad acid trip. The texture of a face’s skin may change, or its nose or eyes appear stretched and exaggerated in a grotesque and plastic way. Sometimes a person’s face and mouth are replaced by geometric shapes: triangles, hexagons, etc. When this happens, I call it “becoming Picasso” because they remind me of his Cubist paintings. I had faces that looked like they were made of potato skin or tree bark, like the talking apple trees in Wizard of Oz. And I’ll never forget this time I looked at a manager, and he looked at me with – no joke – a dragon’s head, with dark, dark skin. (Luckily, this distortion only happened once.) The condition I suffer from is called “prosopometamorphopsia” (I know, I can barely pronounce it myself). Those who have it sometimes experience strange visual hallucinations when looking at someone’s face. It is extremely rare: only 75 cases have been reported, and I’m one of the unlucky ones.

Prosopometamorphopsia is sometimes called “demon face syndrome.” No one knows what the cause is – the disorder is usually linked to various brain traumas – and for a long time I couldn’t get a diagnosis myself. My first interactions with doctors were not helpful. Years ago, I explained my symptoms to a neurologist. I reported what I saw, they scanned my brain and found nothing suspicious. The neurologist said something like, “Well, there’s nothing wrong with your brain. And I thought, “I don’t agree.” » But then again, it’s not like they can see through my eyes. It’s not a simple situation, like asking a doctor to examine a rash on your skin.

So, for most of my life, I did my best to ignore the symptoms and go about my daily life. I learned to recognize people by their shoes, their clothes or the way they walk. When I went on a trip with friends and got separated from them, I stayed where I was and waited for them to find me, rather than going with someone who just looks like them. I could manage. But my prosopometamorphopsia became a problem at a previous job at an AV company, which was filled with a group of twenty-something men who, for me, all blended together. I thought I was talking to Tim, when in reality I was talking to Joey. So I saw an ophthalmologist, who treats vision problems, and he basically told me that these problems were just the result of trauma and that due to a difficult childhood, I had difficulty looking people in the eye. It was true. I have trouble looking people in the eye. But when I did it, in the past, I could at least count on seeing someone. real face.

Luckily, it was my sister, who works as a biologist, who told me I might be dealing with a bigger problem in my brain. We went down the prosopometamorphopsia rabbit hole together, and that’s how I first came into contact with Brad Duchaine. Duchaine studies brain science at Dartmouth and has worked extensively on my specific disease. During our first call, he said, “What are your symptoms, what are you experiencing?” » Duchaine was the first person I spoke to about the dragon story. It’s not something that comes up in polite conversation, and I know it can make me feel like I’m on drugs. But he said, “Yeah, it happens. » I no longer felt alone. I was like, “Wait, other people are doing this. Also?»

We’ve been working together since 2022. He’ll send me photos that I’ll look at, and he’ll ask me how they look to me, and he’ll compare that to other people with prosopometamorphopsia. He will ask his research assistants to make certain faces or turn a certain way, and I will let them know if they are distorted for me. It’s very difficult to describe exactly how these hallucinations appear, but sometimes I feel like my brain is moving my inner thoughts into my visual field. For example, I once went to see a doctor and when I looked at his picture, he reminded me of Mr. Weatherbee from Archie Comics. After entering his office, his head was replaced by Mr. Weatherbee’s cartoon face, animated in the background.

I have never been able to determine the cause of my prosopometamorphopsia, and it doesn’t show up in every face I see. I was diagnosed with autism a few years ago and Duchaine told me the disorder could be a side effect. There is also what I like to call the Sulfa incident. Years ago, to treat a strange cyst on my leg, I was diagnosed with a sulfa antibiotic that my body reacted poorly to, and was later told I might have a sulfa allergy. The thing is, afterward, my prosopometamorphopsia got even worse – beyond face blindness and toward “Why does this person have a hexagon on their nose?” » I found ways to relieve these symptoms. Sometimes sitting down and drawing simple scribbles of human faces helps, as a way to remember what people look like.

But you know what? At this point, the distorted faces I see no longer scare me. I’m used to it. I’ve made peace with that. Yes, when I first saw this dragon, it was really terrifying. Stuff like that would make me gasp. But now I can relax, take a deep breath, remind myself that it’s just my stupid brain acting up. People don’t look like dragons and thank God for that.