What I want you to know about having developmental prosopagnosia

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Melody.

I have known most of my life that I am not good at telling people apart. When I was in high school, I would tell people, "I'm great with names, but terrible at faces." Even though I lived in a small town and went to a very small school, I dreaded the teacher asking me to return my classmates' papers to them because sometimes I gave them to the wrong person. It's embarrassing to be the one who can't watch a movie without asking 15 times, "Who is that?"

I have developmental prosopagnosia, or faceblindness, a genetic disorder that affects facial recognition. Prosopagnosia affects about 2% of the population, but awareness is low. A couple of years ago, a friend was talking about someone she knew who had a brain injury that resulted in her not being able to recognize people. She used the phrase "facial recognition skills" in passing. I filed that phrase away thinking, "recognizing faces is a skill; maybe other people have problems with it."

It was several weeks later that it popped into my head again and I googled it. This is when I first started learning about faceblindness. I was so excited to have more understanding of my experience. For my whole life I thought that there was something lacking in my social skills--that I wasn't paying enough attention to other people or that I didn't care enough. Now I know that it’s not a failure as a friend when I don’t know who someone is right away, but a neurological disorder. 

I rely heavily on context, hair, body type, voice, and other clues to figure out who people are. I am generally friendly to everyone, but rarely call people by name for fear that I’ll get it wrong. I have had conversations with people who know me (and presumably I know) that I never figured out who they were. I fear that I accidentally snub people simply because I don’t realize they are someone I know.

When I started telling people about this, they would always respond with, “But you recognize me, right?” I wish I could always answer yes. Some people are easier for me to recognize than others, usually because they have something distinctive about them (hair color/shape, a scar, body shape, voice). When people are in the right context (church friends at church, neighbors in the neighborhood), it’s easier, but if I see someone in a restaurant or without their kids/spouse or at the grocery store, it may take me a few seconds or more to figure out who they are.

Crowds are overwhelming experiences. If I’m looking for someone (like my husband or daughters), I think about what they are wearing and then scan for that color until I find them. If possible, I wait for people to find me. I love events where people wear name tags.

This is a hugely frustrating disorder. It is hard to understand, easy to dismiss or mock. I don’t mind people laughing with me when I make crazy mistakes. Just please don’t be upset with me if I don’t immediately realize who you are.   

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