As with many similar ‘disorders’, there is a spectrum of difference and severity that people who suffer from it appear on.
I have always been terrible at recognising faces, including familiar faces appearing out of context. Until my diagnosis, I took it as a personal failing, as with so many things I believed I was just ‘bad’ at, or wasn’t trying hard enough with, or didn’t care enough about to perform better.
If I do recognise a face, finding the right name to go with the face is another difficulty. This is more short-lived for people I know better, and more evident for people simply in the public eye who I might normally be expected to recognise (e.g. celebrities, politicians, other public figures).
It’s not a problem, just annoying, when I get the characters confused in a movie, because they are both tall with blonde hair, or both curly-haired children.
It’s slightly more frustrating and embarrassing when I get all my nephews and nieces confused because they all look the same to me.
There are numerous other times when I think I recognise someone out in public but I’m not sure if I really know them. I think: “Do they just look like someone I am supposed to know? Do they just have one of ‘those’ faces? Are they a shopkeeper/ neighbour I am used to seeing but don’t actually know? Or, are they someone I do know and I just can’t remember who they are right now?!”. It can be very stressful when this happens, so I generally just give them a smile or brief greeting and hope I don’t know them well enough for them to expect something more.
There are other times when someone mentions to e.g. my husband that they saw me somewhere and I just ignored them when they tried to say hello. My total spaceiness aside, I obviously didn’t recognise them at all on these occasions.
Many social occasions consist of me introducing myself to people I have already met, or apologising because I can’t remember who they are/ what their name is. On one infamous occasion, I sat next to a couple at a dinner event and chatted to them for an entire evening. It was days later when for some reason I put two and two together and realised that they were the same people I’d met a few months before & chatted to about their family. The same family they’d been talking about all night again. Suddenly, the funny looks I’d been vaguely aware of, made sense. They’d remembered me, and realised I hadn’t remembered them, but were too polite to say so.
It also manifests in things such as noticing someone who to me looks like someone I know, but I’m not sure if they are them or not. I have no way of telling if it is the person I actually know except for hoping they notice me first, or if I am with someone who also knows the friend-person, and can tell me if it is or isn’t them.
One instance I was deeply ashamed of for years. They are dead now, or I might even talk to them about the event. I was at a family birthday celebration, with a few people I didn’t know very well, but most I did. In talking to an elderly gentleman, I did my usual apologetic if abrupt introduction to someone whose name I’ve forgotten but believe I’ve met before, and asked how they were related to the special guest. The gentleman looked hurt, even shocked, paused and answered “I’m (guest’s) husband”. I don’t recall what I even replied to that. I may have just apologised and kept talking. The special guest was a direct, close blood-relative of mine. I never forgot that incident, and berated myself for years after, thinking I’d hurt this person, and they had thought I didn’t care about them, and if I’d just remembered faces better, I would never have done that.
These are just a highlight reel of instances when prosopagnosia affects my daily life. Many of the occasions I am aware of are only trivial in nature. There are probably many more instances of social disaster or mishap that I am blissfully ignorant of also.
On the whole, this just adds a level of background stress to my every day life that I can mostly deal with. In the past, what was most frustrating was the way in which I would berate myself for not ‘trying’ harder, and basically not ‘being’ more caring, that I was not able to basically distinguish between different people.
Like so many things I am discovering about myself since my autism diagnosis, being able to describe and apply a disorder such as prosopagnosia allows me to draw together similar events, actions or behaviours like these and put them into context. A context in which I am firstly more aware of myself, but mainly where I do not have the capability to perform differently in these situations. I am aware of my limitations, more than simply beating myself up for my perceived failings.
As self-awareness is something I greatly struggle with, this ‘label’ and many others I am finding for myself, are very helpful and even liberating, after feeling so long just feeling ‘wrong’.