3.3 Prosopagnosia interview

I found out I had face blindness about six years ago and I think the reason I found out was because I'd started to get increasingly worried about certain things that were happening which I couldn't explain.

And there was an incident actually where I went to a bus stop and stood behind this young lady and just stood there waiting for the bus and then she suddenly looked at me and went 'Mum, aren't you going to say hello?'.

And I though oh my god, you know, and at that point I started to get quite worried thinking this is quite serious. It wasn't really until she sort of moved that I started to recognise her and at that point I didn't know what it was, so I went to the doctors and found out I had face blindness and it was a huge relief. It was a really big relief when I found out because obviously it wasn't dementia, brain tumour or anything like that. So I have developed mental Prosopagnosia, which means that I was born with the condition and because I've had it all my life I'm sort of used to it.

So there are sort of times when I get caught out and realise I have it and other times I manage quite well. But it has taken quite a while to actually come to terms with the fact that it influenced practically everything in my life without me realising. My friends tend to be quite distinctive looking, people that I've gone out with in the past look quite different, even things like my musical taste. I sort of grew up absolutely loving David Bowie and Siouxsie from Siousxie and The Banshees obviously because they're so distinctive. But I hadn't realised how importantly actually face blindness plays a part in that.

I think the coping mechanisms that I've got I've always had, I don't think those have changed a great deal since I found out.

I'm more aware of what coping mechanisms I use, so for me I think movement is quite important, I can recognise people by the way they move. I can recognise people's voices and I also have quite a strong physical sense of somebody. So I've learnt to listen to my own body more really in reaction to other people.

One of the most stressful situations is around meeting new people who you know you're going to keep meeting. So I'm great at meeting new people, I can talk to them, I'm quite comfortable but it's the second time I meet them or the third time I meet them, that I start to worry about it because at that point they'll expect me to recognise them.

So when I was younger, for example, if I went on a date then that could be quite amusing, in the sense that, I remember going out for a drink with somebody, then needing to go to the ladies room, as you do and then when I came back I suddenly couldn't think where I was sitting or who I was with, so I was completely lost just looking at a sea of faces and just relying on that person to call me over. I think quite often I just look at other people and think wow they're amazing they can do that or they recognise me. And I never really understood it was because I had a problem.

Many years ago I lived in Italy and I was sort of going along, minding my own business one day and I was wearing a necklace with a very fine chain and a little locket. And as I was walking along this young man was walking towards me and he suddenly hit me on the chest but took my necklace and ran off with it and so I thought I'd do the right thing and go to the police and tell them what happened.

So I did and they said to me 'well you must have seen him' here's a book of pictures of young men about that age. And I'd like you look through them and tell us if you can identify him. So I went through this book and at that point I had no idea I was face blind. All I could think of was that I wanted to be really helpful, so I was going through this book and it was like picture after picture after picture of all these different men and at the end of it, I had absolutely no idea. I was so confused about who I'd seen what I'd seen. And then instead of letting me go, they actually brought another book and I had to go through another book and there must have been about a hundred pictures in each book. And

Yeah I just couldn't do it.

You get a lot of people who will say 'Oh I don't remember people very well as well' and they don't quite get the level at which somebody with a condition actually has it. Other times, people will say 'Oh yes but you'll remember me though won't you?'. It's not the person per se that I don't remember, I will remember all sorts of details about people. In fact, I think I've got a pretty good memory and I will connect with that person, I will have feelings for that person, I'll have a normal relationship with the person. It is just about that recognition, that immediate recognition. And you know sometimes it might take a few minutes before I can really connect with somebody.

I think there are quite a few misconceptions about face blindness. Recently there have been a couple of films that have come out that have featured face blind characters. People that have acquired face blindness because they've had an accident or something and there was one film, for example, where the woman looked into a mirror and then screamed cause she didn't recognise herself and I think that is such a misconception because if you're looking in a mirror you know you're looking in a mirror so you know that's going to be you.

But there are times when I'm caught out, I remember being on a bus and watching a kind of video screen that they have of all the passengers on the bus. And I was looking at the screen and I picked myself out on the screen and just kept my eyes fixed on me, on the screen. And then all of a sudden I got up on the screen and I suddenly looked down and looked up, I looked at the screen again and I was just so confused because I thought I'd been watching myself but obviously I'd been watching somebody else all along and then I moved my hand just to double check in case it was me and I had got up and hadn't realised it somehow. And then thought no. So after that I spent some time actually looking at the screen trying to pick myself out. I know that I've got dark hair, I know I'm a certain age, I know I'm a little overweight, so it really was through a process of elimination, looking at this screen trying to figure out who I was. But it can be quite disconcerting. I remember when I told my daughters that I had face blindness and my eldest said 'I wish I'd known when I was younger' and I said 'Oh why?' and she said 'I would have got away with so much more stuff'.