"Do I Know You?" Living With Prosopagnosia

I recently attended a big, beautiful wedding in Sussex – my partner's cousin Gina was tying the knot. We had three days of festivities and countless new people to meet. Now, my partner's side of the family is LARGE. Hundreds of them, it feels like, to an only child of an only child, but they're all friendly and funny and frankly a joy to be around, so I really looked forward to it.?

Until Wedding Eve, that is. We congregated first at the Mother-of-the-Bride's house for drinks and mingling, followed by a lovely dinner at the swish local eatery in the village. The eating part was fine; I excel at eating. My difficulties began on arrival at the MOB house. It was (pleasantly) packed with relatives and guests, most of whom I hadn't met before and the rest of whom I couldn't recognise, but I was excited to see and meet everyone. However...people you've already met generally don't take kindly to being forgotten, and because I have prosopagnosia, it's more unusual for me?to?recognise them than not to.?

Are you face-blind?

You know when someone meets you for the first time and says, "I'm sorry, I'm terrible with names!" They're forewarning you that they might not remember what to call you next time they see you and not to take it personally. It's apologetic and it's polite. Me, though? I have to say: "I'm sorry – I'm terrible with faces!" And I really mean it. Have you ever heard of?prosopagnosia? Put simply, it’s face-blindness, and it's real. It’s actually estimated to affect around 2.5% of the UK population, and wasn’t even recognised by the NHS until 2016 [1], though the condition is thought to be more common than autism.

After decades of silent panic when engaging in conversation with people I don't recognise who clearly know me well, I was so relieved to be formally diagnosed with?prosopagnosia earlier this year...or as formally as you can be, anyway. It's still a poorly understood condition, and diagnoses are tricky to come by. But research is being done, quietly and determinedly, largely under the radar of mainstream academia, as is so often the case with conditions that aren’t visible and don’t have awareness days or special ribbons.?I’ve had the privilege of participating in studies with the University of York and Birkbeck University of London in an effort to help science understand my brain, and me to understand my brain’s science. According to John Dabell [2], “prosopagnosia is thought to be the result of abnormalities, damage, or impairment in the right?fusiform gyrus, a fold in the brain that appears to coordinate the neural systems that control facial perception and memory.” I don’t know about my fusiform gyrus and don’t recall having trouble with faces before my first concussion (of many, due to my autoimmune disease that frequently makes me faint like an overcorseted Victorian lady with the vapours) in my 20s, but perhaps I just hadn’t really noticed it yet. My world was much smaller then than it is now.

You tryna trick me?!

Back to Wedding Eve. The house was huge, the family was huge, and everywhere I turned I was being introduced to someone new (or not: "And of course you remember Jasmine and Erica from last Christmas, don't you?" Nope; I really want to but absolutely can't – please don't hate me). The place was crammed, everyone looked the same to me, and the usual techniques I use to help me keep track (where people are standing/sitting and what they're wearing) were continually thwarted this time, not just by people wantonly mingling and swapping places, but also by others going off to get changed for dinner and coming back in generic smarts that I couldn't tell them apart in, when I’d been doing so well keeping track of them by hoodie colour. I tried my best to quash my rising panic, but the longer the evening went on, the more confused and anxious I felt. I knew at least some of these people; I'd met them once before. But that was a year ago and they all wore the same clothes and sat in the same places that day. Now I couldn't recognise a single one, and to hide my internal freakout, I simply defaulted to pouring glass after glass of champagne for people and smiling like a simpleton at everyone who addressed me. My mother taught me the latter: when in doubt, just smile. It's a largely effective technique, although it can make you look rather…vacant. I also deployed the New York Party Scene Hello: a kiss on each cheek and saying, "Nice to SEE you!" It's a pleasant generic greeting just in case you have met the person before, that also works perfectly if you haven't. Eish.....I'm so tired just writing this.?

It's not just me (or you)

Brad Pitt claims to suffer from prosopagnosia, and I admire him for speaking up about it; I’ve only ever experienced mockery for my difficulties. ‘Trouble?with faces’?is of course not as sexy as cancer breakthroughs and curing COVID, but as per usual, there's always one small pocket of people enthralled by a little-known and under-researched human condition who keep on doing their best to scrape together funding and participants to conduct studies in a field that fascinates them and torments their subjects immeasurably, so that they can try to help. I've been very privileged to spend this year participating in research trials carried out by people who want to understand what causes face-blindness and how it can be managed. They've tried to help me understand why all faces look the same to me until I get to know a person, and I've shared with them the techniques I use to help me recognise people I should 'know' but don't until I have certain visual cues memorised. With women, it's hair colour and body shape (sorry). With men, it's eyebrows, ears and teeth. (Oddly, skin colour doesn't even register with me.) Nonetheless, when I was still contracting in the NHS and starting a new job and meeting twenty people a day – which was common – there's only so far that can take you.?

Belle of the boardroom? Nope

Sometimes I would be introduced to a hospital's Director of Something Really Important in the morning, and then ask them politely in the afternoon, "Hello, are you here to see someone?", only to have them remind me rather tersely that they are 'Someone' in a tone that suggested I must be mentally deficient for not recalling them and for addressing them as a stranger. But it takes me about two weeks of scrutinising hair colours and styles, eyebrows, ears, body shape, height, and even shoe choices before I can start to tell people apart. Even when the HR lady has long brown hair and the COO's hair is short and blonde, they honestly look the same to me until I start taking notes, mentally or in the secret notebook I take home because I don't want anyone to snoop through it and read all about my struggles. I still feel compelled to hide those, because I know my difficulty is still unacknowledged and I feel embarrassed and sometimes even judged, however unnecessary that may be. It's a hardwired thing, I guess. Eventually I began to refuse contracts that required minute-taking, because when faced with a room of 20 or 30 strangers who barely introduced themselves and then didn't even stay in the seats I'd allocated them to on my paper 'map' when they arrived and initially sat down, I had no chance of keeping an accurate record of who said what when Pink Shirt Lady had moved elsewhere and Pinstripe Man arrived ten minutes late and took her seat and then somebody put a jumper on and someone else removed their tie and it was chaos thenceforth.?

Nightmare jobs. They honestly kept me awake at night, anxious about how I was going to take accurate minutes at the next day's meeting when I knew I couldn't tell one person from another and they'd all move anyway and make it even harder.?

Yay for the Zoomies!

The advent of Teams and Zoom has stripped away this problem for me so effortlessly, it's been nothing short of a revelation. I now have a permanent position (which I LOVE), and I didn't even set foot in the company's office until I'd already been working there for several weeks. My interviews, onboarding, training, and meetings were all conducted via Teams video calls, and with only people's head and shoulders to look at and no background 'chatter' (e.g., other people's faces and hair and eyebrows and clothes) to distract me, the first time I (nervously) walked into the office, I was able to recognise my colleagues immediately. That has never, ever happened for me before. It felt so wonderful to just walk in and say "Hello!", like other people get to do every single day.?

It's gonna be okay; I promise!

So...if you’re ‘terrible with names’, it might well be worth considering whether actually you're terrible with?faces?instead. Either way, if you feel like you could do with a little help – for either issue – don't feel like you have to put up and shut up and keep your anxiety to yourself. There are now lots of online resources about the condition, and some are really helpful. And speaking up and seeking assistance...isn't that what DEI is all about? Don't be afraid to go ahead and help trailblaze solutions. It's not just about?prosopagnosia; it's about every disability, and DEI shouldn't be a 'problem'. It just needs a bigger, brighter spotlight so that everyone can see all its facets. We're all facets, whether disabled or enabled, and the more facets we have, the more beautiful we are – together. So go and sparkle! I might not recognise your face, but I guarantee that I’ll recognise your spark.??

For more information and resources:?

https://www.troublewithfaces.org; https://www.faceblind.org/research

An excellent and terrifying novel about the impact of prosopagnosia: When I Find You, by Emma Curtis

References:

1. https://www.nhs.uk/conditions/face-blindness
2. https://johndabell.com/2019/01/07/face-blindness