If I say the word ‘Prosopagnosia’ to you, do you know what it is? Is it:
- A country that borders Outer Mongolia?
- A favourite dish on some Greek islands with pomegranate as the main ingredient?
- A condition also known as face blindness?
The correct answer is ‘c’.
When I was diagnosed with HIV and AIDS in 2006, my AIDS-defining illness was Progressive Multifocal Leukoencephalopathy, which effectively paralysed me. I have (mostly) recovered the use of my arms, legs and speech, but some bits of my brain have not recovered. Later, I was diagnosed with dyspraxia as a result of the Encephalopathy. More recently, I was diagnosed with Prosopagnosia – face blindness.
It can be a difficult and sometimes embarrassing condition to live with. To reduce the embarrassment, I decided to describe what it’s like to live with so you can understand why I may inadvertently blank you when we meet face to face.
When we’re out walking locally, my partner will often nudge me and said, sotto voce, “Smile, neighbour approaching.” I smile at them and say, “Hello!”
The next day, when I’m on my own, I may walk past the same person and completely ignore them because I don’t recognise them. They must think I’m extremely rude, but they don’t know that I have this condition.
Living with Prosopagnosia
Living with this condition is embarrassing and uncomfortable. It’s hard knowing that people think you’re being rude and ignoring them. I’m not – I just don’t recognise them. And sometimes I suspect I may come across as grumpy, too, although that may just be to do with getting older!
People want to be known and recognised, naturally. We all have labels – names – but I can’t put your name to your face because I don’t remember your face. When you consistently keep not recognising someone, it gets harder. Initially, we may laugh it off with comments like, “Please forgive my terrible memory.”
But over time, when it keeps happening, it gets very awkward for both me and the person I don’t recognise. Many people feel hurt, or even insulted, when I don’t remember them. And I don’t blame them.
I may start to give a long explanation, but more often than not people don’t want to listen.
Even my own partner has to look out for me if we’ve arranged to meet somewhere public because I can’t always see him, especially in a crowd of people.
With my work, it’s important to attend networking meetings regularly. But I struggle to enjoy them for this reason.
Attending networking events was getting exhausting. One particular regular event does a business card shuffle; I’d make notes on the cards about the meeting, the date, and anything else to remember the person by, including physical appearance. But people can change their hair or shave off their beard!
I have hundreds of business cards with notes on them, but I can’t carry them all around with me. The effort of struggling to recall a note I made on someone’s business card about their appearance, and then having to use humour to deflect my inability to recognise them, is very draining. It was getting to the stage where I would use avoidance tendencies.
When I visit businesses to deliver workshops or training courses to several delegates, I explain at the end that I won’t recognise anyone when we meet again. I ask them to come up and tell me if they’d attended a workshop before or if we’d met somewhere else.
Like most people with conditions that impact not only their lives but others, too, I thought I’d better develop some strategies. This is particularly necessary if your condition is not easy for other people to fully grasp.
For instance, autism – a coping mechanism would be only going out in public when you know that the supermarkets are quieter (these days, social distancing may make that easier for some people with autism). Another would be only going to those cinemas that have screens specifically for people with autism. Those are just two examples of many strategies that the autistic person, or their parent if they’re young, must develop.
Another example is people with restrictive eating disorders and the anxieties that usually co-occur. Again, strategies need to be implemented to help them and their family eat out. If they’re seeing friends or family, they would discuss in advance what food will be available, mealtimes, and so on, taking their own food if necessary. If going to a restaurant, they would check the menu online and then ring to ensure that the menu is still correct, asking for specific meals to be available.
These are good strategies to help us cope in society, because social interaction is crucial for our mental wellbeing both in a personal and professional level.
What are my strategies? You may well ask! I’m currently working on a short phrase that I can drop into the conversation when I meet somebody for the first time. It will remind them to anticipate that next time we meet, if they were to approach me with a big smile, clearly recognising me, I may blank them. And that I don’t mean to. If I have made specific arrangements to meet somebody I will try and find a photo of them so that I can refresh my memory nearer to the time of the meeting in order to make sure that I am meeting and greeting the right person! Or I may choose to just have a fixed smile on my face so that anybody who recognises me doesn’t think I’m ignoring them. However, that has backfired on occasion when randomly and indiscriminately smiling at complete strangers…
Social niceties are so hard. Some people do know about my Prosopagnosia now, so will come up and re-introduce themselves and I’m grateful to them for that. But they only know because I have taken the decision to inform them.
Support for the Supporters
Result CIC offers three free coaching sessions to people who really need it, such as NHS workers, care workers, suppliers of food or delivery drivers. Or anyone else working to help others during the Covid-19 crisis. As part of their Inclusion Fund, Result CIC asked me to deliver some support coaching to an NHS worker.
In other news…
Ripples from the Edge of Life
It’s two years since the launch of my book! It’s both humbling and satisfying to have received so many kind comments and recommendations about how helpful it is.
Celebrating Disability Webinars
The organisation Celebrating Disability carries out webinars on disability awareness training online to help organisations and their employees learn all about disability in the workplace inclusion. Esi Hardy, Managing Director of Celebrating Disability, invited me to participate in one of their webinars as part of their experts’ panel. The event, held in May, went down very well as usual.
IEDP – Institute of Equality & Diversity Professionals
Recently, IEDP published one of my articles about fear, stigma and support. It also compares Covid-19 with the ongoing global HIV/AIDS pandemic. Do have a read of it here.
I was hugely saddened to hear that my friend and former client, Shahin, died recently of coronavirus, aged just 56. His photography was quite beautiful.