You are at a party. You are introduced to the wife of an acquaintance. You have met her before over the last ten years, at least three times. She shakes your hand as if she has never seen you. As she walks away, you are likely to think, “She is so rude! She knows she has met me before.” Maybe you say it out loud, and maybe your friends agree with you, having experienced the same thing with her as well.
But there is another explanation. She really does not remember meeting you. She has prosopagnosia, also known as facial blindness. Once thought to be very rare, it appears to be more common than we thought. When people with prosopagnosia figure out what they have it, they are often relieved. They finally have an explanation for why they cannot remember people and faces. It is not because they don’t care about people, don’t have the intelligence to remember or don’t really try to remember faces. It is just not a tool in their toolshed. Like most things, there is a spectrum with facial blindness. Some people say they never forget a face all the way to those that cannot recognize the face of their mother and father.
How do I know about this? I happen to have a touch of it. I didn’t know that facial blindness existed until recently. I used to wonder what was wrong with me. I felt guilty about it for years. I felt like there must be something wrong with me as a person that kept me from remembering people. I am able to remember my kids, my husband, my siblings, and a few really close friends. Beyond that, it is hit or miss.
My particular form of prosopagnosia includes inability to recognize faces and names. For example, every year I dreaded our family reunion and the inevitable awkwardness of seeing cousins and aunts and uncles and having no idea what their names were. I might manage to remember how some of them were related to each other, at least group them in families, but that took a few years. Unfortunately, since I only see most of them once a year, if I see them anywhere other than the Blazek family reunion, again, it’s a crapshoot if I will be able to figure out that it is a relative, and it is very unlikely that I will be able to pull up the name. I have started seeing my cousins more often and that has made a big difference.
So how has this affected my life? Is it a disability? In a way it is. I remember being with a group of people who were discussing a girl that was such a snob because she always acted like she didn’t know them. Gulp. That could totally be me. Actually it was me. I distinctly remember someone telling me in a very rude voice, “You know, we have met several times.” Please let a hole open up in the Earth and swallow me. After that, I was very careful to be neutral when meeting new (?) people in case, um, they actually weren’t new. I have gotten pretty good at this. I will either say “Nice to see you,” “How are you?” or some other phrase that fits both new and old peeps. It’s a skill, like any other.
After my children were diagnosed with Asperger syndrome*, I learned about facial blindness. I was actually quite relieved. I knew I wasn’t just a cad, I actually have a disability. Knowledge = Power. Now that I know this, I can without embarrassment, explain it to people. I have a name for it. I don’t have to say, “I’m a complete jerk so I won’t remember your face or name if I see you again.” Instead I say, “I have facial blindness, so if I see you again and act like I don’t know you, please come up to me and tell me your name and how we know each other.”
I know that sounds weird, but it has really worked for me. I was just at a wedding and a very nice person whom I truly really like approached me. I was thinking, crap, she looks like someone I might know. She came up and introduced herself and reminded me how we knew each other. Once she did that, I knew exactly who she was. Even though I have met her kids many times, I would not recognize them and have no idea what their names are. I did know their names during my conversation with her, because she reminded me. But I’ve forgotten those names. I can pull her name up at the moment, but it will be gone by next month, unless I see her before then.
Another example: I introduced myself to a doctor at the hospital where I work. He told me we had met before a few times. He said it in a really nice way. I explained the prosopagnosia and that I might just do it again six months from now (which I did, dammit). He was actually very amused by the whole concept. So is it a disability? It can be, and like most disabilities, it is possible to figure out coping mechanisms.
I have developed a surprisingly positive perspective on this disability. In my case, now that I know what it is, prosopagnosia really suits my life and my career. I am a primary care physician in a large town, but in a neighborhood that acts like a small town. Many of my patients are neighbors, related to each other, friends with each other, whose kids go to school together. Just going to the grocery store or the local café, I may see a handful of patients.
Most doctors would have a hard time truly separating out their life as a doctor from their life as a neighbor and friend. This is not a problem for me. I love my patients and spend more time with them than most doctors. I am interested in what makes them tick, what makes them happy and sad. When I see them out in the community, I really have no idea who they are unless they tell me. Even if they tell me they are a patient, I have no idea what is going on with them medically. Without opening their chart and reading what is in there, they are just Joe Patient. Once I do see them back in the office, and open their chart, the whole story comes back together and I know exactly who they are, what problems affect their lives.
I don’t know how to explain it except to say that my patients don’t have to worry about my gossiping about them. If I am lucky enough to recognize them, I will likely not know if the person they are with is spouse or lover, even if the other person is my patient. By being unable to recognize them in the community, I ensure full patient confidentiality without even having to make an effort. It’s an unexpected “benefit” of having a social communication disability like prosopagnosia, but it’s one that in this case works to my advantage … and my patients’ advantage.