We spoke to people who have it about how they deal.
Danil Nevsky / Stocksy
Can you imagine not being able to recognize your friends, your parents, or even your own face in the mirror?
It sounds like some blurry-faced mess out of The Ring, but it’s actually something thousands of people worldwide experience everyday. The mysterious neurological condition that afflicts them is known as developmental prosopagnosia, or face blindness, and it means they struggle to recognize familiar faces.
Prevalence is estimated at two percent—but it could be much higher as many people have no idea that prosopagnosia exists or that they can get an official diagnosis. Scientists are working hard to dig in to a condition that fascinates them, but so far, they haven't been able to identify its causes. And there are still no treatments available. “The best option right now for patients is to get in contact with researchers who have an interest in studying the condition. There is still so much we don't know—including exactly how many people have this—so we really need to conduct more studies,“ says Punit Shah, a researcher at the University of Bath in the UK.
I spoke to four people who are often left trying to figure out for themselves how best to function in society when they can’t recognize one of the things that makes the people they meet unique—their faces.
Stephanie Chase, 28, Saint Paul, Minnesota
I was diagnosed with face blindness at the age of 21. I had obviously figured out by then that there was something going on with me, but I had not thought too hard about what it was. At the time, I was working at a waterpark with 60 other lifeguards. People seemed to know me, yet I didn’t seem to know anyone. Finally, it came to the point when a complete stranger came up to me during an afterwork event and said, “Hi Stephanie, how is it going?” To which I replied “Great, guy who I’ve never talked to before.” He looked a bit shocked and said, “Dude, I work with you.”
It really hit me me that this wasn’t really normal, and then during a session of googling, I came across an article that listed the top ten phenomena of the mind. Three sentences described prosopagnosia, and it was enough to make me go: “Oh my god, this is what I have.”
I was then officially diagnosed in London. There was nothing much that the scientists could do for me—there is no treatment. But it was about making me more aware and validating me, and this has helped. It has explained so much about my life, and made me realize that this had actually been affecting me since childhood.
I struggle to recognize the faces of people close to me. I don’t even recognize myself in the mirror. I’ve had staring contests with a stranger in front of a mirror because I thought it was me. I was actually looking at this person up and down thinking, “I’m looking good today,” until I realized that it wasn’t me. Motion makes it easy to recognize faces, so it’s common for people with prosopagnosia to study the mouth of the person they are talking with, but at some point you cross into “it looks like I’m trying to kiss you” and it can be really awkward.
I find that telling people is the easiest way to cope, because if they really want to get to know you, they will remind you of who they are. That being said, when I’m interacting with a complete stranger I also hesitate to tell them, because it would be easy to take advantage of me and I would have trouble pointing them out later. For me though, prosopagnosia it's just a fact of life, not negative or positive but a bit of both. I make fun of myself more than my friends do, and we sometimes have a good laugh at my expense.
Nicolas Blexmann, 36, London, UK
When you are a child, it’s normal to forget the faces of grownups, so I didn’t realize that I might be different until I reached early adulthood.
I remember a very precise moment when something clicked, and I was like, “Okay, maybe something is not quite right.” I was hanging out with friends from my university, when we saw a cute girl walk by. We commented that she looked pretty. When a moment later, another pretty girl walked by, I mentioned it to my friends too. They all started to laugh, because it was the same girl.
These situations can be embarrassing, but they are most of the time amusing. The only time when it’s been a problem is in a professional context. Once, I was talking to my boss—who has a shaved head—about a project, and then he left the room. A bit later, I came across another man in the office, with a similarly shaved head. I had no idea if it was my boss or not. For the next 15 minutes, I made conversation, asking many questions to find out who he was. Turned out it was a different colleague. The worse bit is that when they were next to each other, I realized they looked nothing alike.
I’m very good at identifying people from the way they walk or the way they talk. These are little techniques I learned in order to cope and most of the time it works—but not always. I find it especially hard to recognize women, especially if they have long, straight hair, because it’s quite a common hairstyle. What I can say is that knowing about prosopagnosia has helped a lot, as I can now explain to people and they tend to be less offended if I don’t recognize them the next time around.
Kate Hargrave, 38, Leeds, UK
My son is now 18. When he was a child, I would go to pick him up from school and would not know who he was—I would have to wait for him to come and find me. It was terrible and I knew something was wrong, but it was only three or four years ago that I heard about prosopagnosia.
I was speaking to a man at a party, who was bald with glasses, and there were about four other bald men with glasses there; I kept getting them all mixed up. The man I was speaking with asked me if I heard about the condition. He assured me that it was not that I was bad at remembering things, but that it was a natural way in which my brain was processing things differently. This was a revelation. Now, as far as social interactions go, I’m super friendly to everyone in case I’ve met them before.
About 12 years ago, I was a witness to a crime. A car sped past and crashed into a lamppost, which then fell on the car. Two people got out and ran off—it was obviously a stolen car. I called the police just as one of them returned to the car so I gave a really detailed description. About three months later, the police asked me to go do a video ID. As soon as the first video came on I said: “Yes, that’s him.” Then the second one came on and I was like, “No, that’s him.” It seemed like they were showing me the same person over and over again. I just thought I was so bad at remembering, and disappointed that I couldn't help the police. Having an awareness of what I have, and knowing there is a name for it, really helps.
Andrea Ridout, 56, Dallas, Texas
Although I can remember mixing people up even when I was a young kid, I first realized that I had serious trouble with faces when I was in my 20s, when I started my businesses and considerably expanded the number of people I was interacting with on a daily basis.
A couple of years ago, I opened a hardware store and was often on the floor helping customers. One day, a nice lady came in wearing a bright orange coat. We chatted for a few minutes and then I left her to help another customer. A few minutes later, I noticed another lady also wearing an orange coat. That was not unusual as we often had groups such as real estate agents come into the store together and they might all be wearing a similar outfit. So as I greeted this second customer, I was a bit surprised when she gave me an odd look. In fact, the store seemed full of ladies in orange coats and I kept running into them. I welcomed each one and inquired if I could help them. Finally, on perhaps the fifth or sixth encounter, the lady very rudely told me to leave her alone or she would call the manager. I immediately realized that it was the same lady over and over again and I did not recognize her face.
For me, it is very unpredictable. Often, I know people immediately. But just as often, I will not even know someone with whom I spoke just a few minutes before. Heaven help me if they put on a jacket or hat. Then I am really sunk as my brain often uses clothing as cues, although it certainly didn't do its job in the case of the lady with the orange coat.
Though I am often somewhat embarrassed, especially when I don't recognize a neighbor or good friend, the only time that I ever remember being scared is when I didn't remember my own son. He had been living in France for a year and I flew in to Paris to spend the week with him. While waiting at the airport for him to pick me up, a nice young man approached me and smiled as though he knew me. I did not know him until I recognized the shirt that he was wearing as one that I had given him. It was my son—and I was truly taken aback that I did not know him from Adam.
Read This Next: What Happens to Your Brain When You Stop Believing in God