Times of Oman
What is it like to live with face blindness? Hazel Plastow tells the agonies of not recognising her own family
Recognising our nearest and dearest comes naturally to most of us. But for an estimated one in 50 like Hazel Plastow, a 57-year-old charity executive from Caterham in Surrey, face blindness challenges her daily.
Hazel has a curious condition that means she is unable to recognise her husband, parents, friends and colleagues. She can’t even identify her own face in a photograph. Face blindness, or prosopagnosia, is a spectrum condition that can affect someone relatively mildly or, as in Hazel’s case, severely.
Yet despite its relatively high prevalence, the condition remains fairly unknown. A new support group, Face Blind UK – established by a group of people with the condition – hopes to raise awareness and highlight support and coping strategies for those in need.
Hazel first learned about face blindness four years ago after hearing a radio report on an American research project. Understanding completely what she heard, she contacted a researcher specialising in the condition at the University of London and was diagnosed.
It was a huge relief. “It shows people it isn’t just that you aren’t trying hard enough,” Hazel says. “Without knowing there is a reason, you end up doubting yourself.”
The frustration felt by herself and others towards their inability to recognise anyone has been lessened by the understanding that the condition is permanent and beyond their control. “It’s like being short. You wouldn’t criticise someone for that,” she says. Hazel is now also more able to control her own anxieties. But the feeling of disorientation remains a familiar one. “Your reality is shifting all the time,” Hazel says. “We were at a family meal recently and I thought the waitress had come over. Actually it was my sister but I hadn’t seen her get up from the table.”
In a few cases, face blindness develops after a brain injury such as a stroke ( known as acquired prosopagnosia), but the vast majority of cases are lifelong – due to a particular part of the brain not having developed in the normal way.
Hazel has had the condition as long as she can remember and as a child, she was always seen as very shy. “All my life I have been fitting around the face blindness,” she says.
At school, she always sat at the back and was only able to form a few friendships: “I was very insecure in the social melee, even in a small school, and I relied heavily on the routine and context to try and work things out.”
Often, she explains, prosopagnosics seek out the company of people with distinguishing features. One boyfriend was six foot four with a large beard. “That was easier. It gave me more confidence walking into the pub to meet him,” she laughs.
As she grew older, Hazel found her condition increasingly limiting. The developing relationships and social life of the late teen- age and early adult years were stressful. “I worked very hard at covering up,” she says. “I thought everyone else was just better at social things.”
Hazel has developed many tactics to help herself: “Often I can tell from the way someone acts that I must know them. I have people walk up and hug me but I have no idea who they are. I ask general questions hoping for clues – some family names or something.” On many occasions, though, she says she walks away none the wiser.
At work – where she regularly has to attend meetings and conferences – she is particularly good at remembering names and uses notes and diagrams as triggers. But people can take offence when she is unable to recognise them. Certain settings are particularly challenging. “Funerals are the worst. It isn’t the place to start talking about your own issues and there are people you ought to know and people you’ve never met.”
At her mother-in-law’s funeral last year, Hazel found herself in conversation. “I asked the woman how she had known Muriel. She was my cousin.” Dr Sarah Bate, director of the Centre for Face Processing Disorders at Bournemouth University, believes awareness of prosopagnosia is growing, slowly: “It is perhaps where ADHD was 20 years ago.” There is, she says, much work to be done.
“Without understanding and support, young people can experience difficulty in making friends, social anxiety and depression,” says Dr Bate. “We work with teenagers who tell us they are unable to form relationships and fear they’ll make errors that ruin their chances. The adults who come to us say they want to make it easier for the next generation.”
There is currently no treatment, and patients approaching their GPs are referred to university researchers rather than medical specialists (assuming they are given any referral at all), but Dr Bate says departments such as hers can really help.
They can suggest compensatory strategies to ease social difficulties and create support networks among those with the condition. Schools and workplaces can be asked to use seating plans, name tags, even coloured ribbons or badges for children, to help them identify others.
Dr Bate hopes the growing body of research will lead to better support. Developmental prosopagnosia was thought to be rare until the start of the century, when the Internet led to a deluge of reported cases. “But a lot of people still don’t realise they are different. They assume everyone recognises people by their hair, their shoes, their voice,” she says.
Researchers are trying to identify why the condition develops.
In some cases, there appears to be a genetic link, with the condition running in families. An early history of visual problems is also common.
“In childhood, it appears critical to have normal interactions with faces. If that is missed, they may miss a window for developing normal face-recognition skills,” explains Dr Bate.
How severely an individual is affected varies widely: “We have parents who can’t recognise their children. One mother told us she went to the wrong child at the nursery. That is very hard emotionally.” It is, Hazel Plastow believes, easy to underestimate the impact of the condition. “Children, in particular, are very vulnerable,” she says. “They can feel lost and alone. That is why we need to talk about it – we can change that.”