What it’s like to live with prosopagnosia

Prosopagnosia is just a fancy word for face blindness.

While prosopagnosia is usually mentioned and discussed only as part of Asperger syndrome or autism spectrum issues, and only when occurring in sighted individuals, it affects more than just those selected few. It affects people with varying forms of blindness (I’ll skip those for the simplicity here), low vision (like your grandma with cataracts, or an infant – as children’s sight is not very developed when they are young, or that clumsy kid that just seems to always get on the way of the flying sportsballs in school PE lessons even if he has thick glasses), various forms of neurodiversity – and those that just significantly different from the others around them, but who can’t identify that one person of millions around them, perhaps looking unlike them.

I’ve had prosopagnosia for a long time. Does the cause really matter? I don’t think it would. It has caused many embarrassing and frustrating moments over the years.

Humans are usually very sight oriented. Most people can do face recognition, at least when they are exposed to the same people over and over again. Like the other kids in kindergarten, the kids in your elementary school glass, your workmates, your most frequently visited relatives, your core family. And yourself in the mirrors and reflections of you on the daily basis. If I recall correctly what I’ve read in various psychology books, it’s easier to recognize someone who looks more like you (racial type features), or like most of the people you are exposed to in your life on daily basis. If you grow up in Sweden, you can recognize Swedish looking faces the easiest, whereas if you grew up in China, the Chinese faces will be easy. If you then later move from Sweden to China or from China to Sweden, everybody will look the same for quite a while I imagine. On the same time, you will look different from anyone else, so the locals will recognize that Swedish or Chinese person in their town. So when on your day out you’ll just want to go out and enjoy your mundane errands, everyone will recognize that different looking person because they’ve met or noticed you somewhere else, whereas you have no clue who all those people are, or where they know you from. This is sort of where it feels similar to having poor vision or being blind. Who is this person who apparently knows me? When they then continue to tell who they are (a John who fixed your toilet, or a Giovanni who was studying with your housemates or Li who works in the same office building you go to on Tuesdays) it can feel awkward.

And when that awkwardness happens more frequently, it can feel really frustrating. Like you are invisible and everyone can see you, meanwhile all people are faceless when you have no clue if or where they’ve met you.

Like dyslexia, face blindness can be weird to try to describe, especially if you have otherwise somewhat functional sight, so if you can still find that giant letter E on the eyechart on whatever distance. I don’t know all the fancy logistics of how it works on those with good sight and no prosopagnosia. But human brain is wired to recognize faces. There are all the parts that handle the processing of the visual information. Then there is fusiform gyrus, a part that is specializing in facial recognition. What I’m curious is if fusiform gyrus is or will be wired differently, to use hearing and all other senses on those who were born without sight or went blind later. Anyway. Your brain typically wires you to look at faces, to look at the features, facial expressions and so on. While for a faceblind person everyone looks the same (maybe just the shape and coloring of the person, or some might be able to notice differences between shapes of the faces, notice different kinds of eyes, ages of people etc), you will I imagine instantly recognize that that person there is Bobby. From his face. At a distance. When you have less of that skill, you might perhaps notice that that person walks like Bobby (or of course, sounds like him). If you are going out to have a few pints with Bobby, you can wait there and he will recognize you…

If you’ve met someone in one context, it’s impossible to recognize them elsewhere. Someone from work that you notice on a grocery store or walking your puppy? Hah. Not a chance. It’s a random person, you don’t notice the details. In some cultures and smaller places this can be misinterpreted as intentional rudeness, while you simply are not able to identify people from the looks. In some places everyone is expected to say hi or good morning to others, and you might do that and still have no clue (unless you recognize the person from voice then). Some people are able to identify others from hairstyles, others from how they dress or some small unusual things people do. But people cut and dye their hair, they wear makeup, dress differently and wear different styles and colors in different occasions. What I’m used to is recognizing people from their dogs. There’s that neighbor with a guide dog, there was that closer neighbor whose lovely puppy June would recognize me, then there’s that one with a small white dog… so if I run to any of them without them having their dog with them, guess what? I have no clue who they are. I have no clue what they look like, other than a very generic description that would apply to 70% of the people around here (white, probably darker than lighter hair, somewhere between 25 and 60, no clue how tall or of any unusual features).

In some situations people even with good facial memory are out of their comfort. For instance my sister met an ambulance driver in the context of him doing gardener’s services, and could not obviously recognize him as when she had met him the first time, he had just being a person working in an ambulance crew doing their job. If you are just doing your job and are in your comfortable environment, the people visiting you or interacting with you because it’s a rarer occasion will remember you while you won’t remember them. So if you work as a cashier, bartender, bus driver, a celebrity, whatever job where you are frequently exposed to many people, you’ve probably been randomly recognized by someone somewhere else. The same goes for anything that makes you stand out. That guide dog of yours, the wheelchair or mobility aid, the eyepatch, that cochlear implant or deaf accent, that South African accent or how you happen to be the only American, Black, or Chinese person in the whole island. Would it be a stretch to call that situational prosopagnosia? Noone is expected to remember and recognize all the people they meet. And would living in a country where everyone else looks and sounds different from you also fit in the situational prosopagnosia category?

What does all this mean in the real life? If I meet someone, even if I’ve met them before or “have seen a picture” of them, I’ll tell where I am or some details of what I’m wearing. If I know they can recognize me without additional cues, I’ll just wait for them. It also means being often clueless in accidental encounters, who is this person again? And having to try find workarounds. “Have we met?” with a smile can go quite a long way, but even that fails sometimes. (Worst case: yea, we probably have met somewhere sometime, I have no facial recognition and neither does the other, or it’s just two low vision or blind people who can’t figure that either) It also means I have to rely on other things, like people’s outfits or where they are to recognize even what they do (dark clothes, sitting on a bus driver’s seat? Most likely the bus driver). And to make people more comfortable around with some attempts of small talk, and occasionally reminding people of what the poor facial recognition can be mean.

Probably the worst of my prosopagnosia experience was being shown myself in TV. I was shown for a few minutes, and a friend was kind enough to record it and show it to me. It took me very long time to figure where I was, on the screen, and in the end it was only because of recognizing someone else’s distinguishing features on the screen. On the mirror it can at least be a bit easier; you move and your reflection will move too. That was over a decade ago. Can you imagine seeing yourself and not recognizing it’s you?

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12 thoughts on “What it’s like to live with prosopagnosia”

    1. sometimes the not recognizing can be as silly as everything being beyond blurry, like when having myopia and not wearing glasses. so a giant person-shaped fog.
      it’s also weird to realize how image driven everything is. how often can you find a bathroom without mirrors? rarely. i sometimes wish i could replace a few mirrors in public bathrooms with a framed text “you look fine”. 🙂

      Liked by 2 people

      1. Haha! I think more people need frames that simply say, “You look fine.” People sure do care a lot about how they look and I’m guilty of it sometimes. But most of the time I try not to stare at myself in public restrooms. I’ll take a quick glance to make sure everything is in “place” and get out of there.

        Like

      2. i try to get comfortable in the morning (ponytail, transparent makeup base that has spf, a bit of profume, hint of tinted lipbalm, nail polish that doesn’t look odd when it slowly peels off…
        i never was a fan pf wearing a lot of makeup. but some around the eyes. it still feels often weird with bare eyes even if people tell me lots of ladies don’t wear any. but that’s where nice dark or colored shades come comfortable. 🙂

        Liked by 1 person

  1. Reblogged this on Aspie Under Your Radar and commented:
    Face blindness affects me in the least helpful moments – like when my boss’es boss greets me, or someone I serve with on a local board says, “Hello”. It usually takes me at least a second or two, to make the connections – sometimes longer. I’ve gotten so used to it, I guess, that my compensatory techniques cover it up pretty well. So, who would believe me, when I tell them that I often don’t recognize even the people closest to me, on sight? Funny, how that goes.

    My coping mechanism, of just being friendly and cordial with everyone, as though I do know them, comes in handy. It’s disarming. And it helps in other situations, where a bunch of people are standing uncomfortably around each other. I have no idea if I know them or not, for at least a few minutes, so I just assume I already do, and I greet them as such.

    It helps everyone feel at ease. And no one has an idea that I don’t recognize people at first. They never guess 🙂

    Like

    1. That’s where the other techniques can come handy. If low vision and you don’t want to tell that to people, just tell you have prosopagnosia, and if just aspie with that, “I’m not wearing my glasses” or “i just have a really bad facial memory”.
      For giggles, some of the funniest ones I’ve had happen would include people voluntarily telling me where they know me from (should be a given as I blend in some blind environments too well), or “have we met?” when asked from a blind o&m (orientation and mobility, as in blind skills) instructor. He remembered where and when he had met me, ha.

      Liked by 1 person

  2. Interesting topic.

    That example of not recognizing yourself in the mirror…. along with not recognizing yourself on TV… reminds me of two examples of my own.

    One was a picture at a friend’s wedding from way back, over twenty years ago. I remember the day like it was yesterday. I remember the good times, and specific people who were part of the circle of people I knew at the wedding.

    When I looked at that picture for the first time in over 20 years, I recognized the moment or rather, more specifically, the wedding, and all the specific people. I did not recognize the scene that was captured in the picture which showed the bridesmaids in a pose that could be best described as a Charlie Angels pose.

    However, people kept commenting on me in the picture and I could not figure out why. Since it was on Facebook, I was able to mouse over the picture until a box popped up indicating which one in the picture was me. I was shocked. I pratically glanced at the picture maybe five times and it did not register at all that I was looking at me.

    Now I wonder why which brings me up to the next example.

    You explained facial recognization. And there are those who can recognize people by their voices. Even with hearing aids on, I can’t recognize a voice off the bat. In a dark room, with my hearing aids on, if someone was standing next to me, I would be able to tell if it is a high or low voice, not necessarily a male or female, and most certainly not what they are saying. Maybe basic words like yes, no, and certainly sounds. Not necessarily distinguish what sounds like a scream versus a bark which sounds like mark.

    One thing is for sure, regardless of our human conditions, we all assign a value to our internal recognization system, whatever it is we use that works for us. For example, I can’t recognize my own voice even as I speak. Forget about recognizing a recording of my voice even as I see myself talk. Forget about lipreading myself which I admit is harder than lipreading other people.

    But when I do speak, in that instant moment, I assign the value of sensing my voice box to my voice. It might be a fleeting value but it’s the only value I recognize. So if I should lose my voice for some reason, that’s how I know I am not speaking.

    Hmmm….. interesting topic. Nah, I need to strike that. Great topic. Thanks for blogging about this.

    Liked by 1 person

    1. It’ll be really interesting to learn about how the different wiring or compensatory senses work. As so much of the compensation for audio seems to be so visual, whereas I’ve learned to prioritize sound over visual noise.
      So many topics to discover the differences with 🙂

      Liked by 2 people

    1. It would be nice to try for a single day how NTs experience the world wouldn’t it?
      How does their facial recognition work? It’s got to bea very different part of the brain that does that than the one that can recognize an E on the eyechart on the wall.

      Liked by 2 people

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