One of the most important parts of doing research is hearing the side of the people who have the condition. Below are three stories of people with prosopagnosia.
Story from Walter:
“One day […], I saw my brother-in-law from a distance talking with what I thought a little girl. When I got closer, I realized it was my own wife, seriously. Now that is when I realized there was something wrong with me and started checking if there was any online information available. When I found out I suffered from prosopagnosia, it changed my life for the worst because I actually realized that I was greeting people that I thought I recognized and stopped greeting people and avoiding places where I could run into people. I prefer to stay home, instead of going out. […] I don’t have any problem recognizing faces of celebrities and am very good at understanding movie plots. I am really good at remembering locations and always remember how to return from point A to B. I have an excellent short-term memory, yet a bad long-term memory. […].“
Story from Darla:
“[…] I took the facial recognition test and realized for the first time that I can’t do something that everyone else can. I was flabbergasted. Over the next several months, memories came flooding back and now they all made sense, all the times I was confused. When I couldn’t find my daughter who was standing literally right beside me. Embarrassing moments in the office when I’m sure I looked like an idiot… all made complete sense. I realized lots of little tricks that I use to recognize when out and about, as I pass people, I look every single person in the eye. I’ve found if you know someone, their face changes – like they brighten up and smile or something. If you don’t know them, they just walk on by. Sometimes it’s tricky, though. They smile just cause they’re friendly and then you get into a conversation with someone, racking your brain trying to figure out who they are, and turns out you don’t. […] And many friends have started saying their name when we get together, which is awesome. But it’s a little annoying when I try to explain it to someone new. 95 percent of the time, they respond by telling me they’re name-blind. Oh, haha, yeah, that’s funny. When I tell them I don’t recognize my own children, they don’t laugh as much. […].”
Story from susieflooze:
„I’ve had faceblindness all my life, and it’s a horrible struggle. No one can understand what it’s like when I start to realize the person I’m talking to isn’t whom I think. Suddenly, it feels like the ground under my feet is turning to quicksand as bystanders begin to edge away from me as if I’m insane. It’s impossible to make friends and keep track of them – there’s always the risk of me seemingly snubbing them, and that’s created pain in the past even when the person knew of my condition. They suspect that I must be faking, because how hard is it to simply recognize people?! I can’t help it, and seeing the hurt twinge in their eyes when I introduce myself to people I’ve known for 20 years is like a knife in my guts. I feel sick over it, but I can’t do anything about – all I can do is limit my contacts with people, which is killing me. I live alone and have no one to translate who’s who in my life, and it’s made me a recluse. Even curling up with video is no comfort, because the actors I could recognize have died off or retired, and now I can’t even follow the plot of contemporary movies. I want so badly to connect to the world… but I know all too well it ain’t gonna happen for me. Death will be my only release from this trap. So feel lucky, pilgrim. You have no freakin’ idea how bad this loonytunes brainfart can be.“
Sources
- Prosopagnosics Share Their Stories, o.A. (Summer 2019), Face to Face, https://www.faceblind.org/assets/files/newsletters/Face%20to%20Face%20Newsletter%20-%20Summer%202019.pdf
- My Life With Face Blindness, susieflooze (2020), https://www.washingtonpost.com/news/magazine/wp/2019/08/21/feature/my-life-with-face-blindness/
