Prosopagnosia

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'face blindness', clues, context, diagnosis, faces, facial recognition, fragments, identify, interaction, neurological condition, stranger

It was said:

My face blindness is embarrassing – but it tells me a lot about other people

I grew up thinking I just didn’t fit it. Now, I immediately tell people I can’t recognise faces – and their response is a good measure of kindness versus ego.

Sunday morning. I walk down to the beach with the dog straining at her lead. I’m already on high alert. It’s the moment in the week when people are most likely to be wandering along the seafront, feeling chatty. I’m mentally priming myself, sorting through the categories I might encounter: parents from the schoolyard (hopefully with their children), people I’ve worked with (increasingly hopeless), neighbours from the surrounding streets (no chance). I should have gone to the woods today. It’s too risky.

I cross the road and hear, “Katherine! Hello!” I wonder if I can get away with pretending I didn’t notice. I’m wearing earbuds, which is usually a good precaution, but this woman is determined. She crosses the road diagonally, waving. “How the hell are you?” she says. Straight hair, mousy blonde. No glasses, no tattoos. Jeans, a grey sweatshirt. For God’s sake, why are these people so studiedly ordinary? I fidget with my phone, trying to buy time. Her face is plain. I don’t mean plain as in “ugly”. I mean plain as in vanilla: bland, unremarkable. There’s nothing here that I might have stored in words. Her nose is straight. Her eyes are blue. Her teeth are orderly. And she knows me.

“Hi!” I say, as warmly as possible. “How are you?” This can sometimes elicit clues. Not today. One of the many side-effects of being face-blind is that you become uncomfortably aware of the ordinariness of most interactions. We have stopped in the street to say absolutely nothing to each other. And only one of us knows the context.

The dog lunges to her feet and pulls in the direction of the sea. “Looks like she’s desperate to get going!” I say, laughing, “So sorry! Lovely to see you!” And I’m off at a gallop before this woman, whoever the hell she is, can think about joining me.

I didn’t always know I was face-blind. I grew up thinking that I just didn’t remember people. This, as a friend once told me, seemed a lot like arrogance – an aloof lack of interest in others. But that’s not how it felt on the inside.

I was mostly fine in the closed world of primary school, but when I moved up to secondary, I was immediately disoriented. The corridors were full of teachers I couldn’t identify, and pupils I couldn’t tell apart. As we grew older, the girls in my class developed collective crushes on certain boys from the school across the road and I learned to fake my way into those conversations, rhapsodising about faces that were blank to me.

I barely got to know anyone at university. Unless they lived in my building, they were all part of the general blur of boys with floppy hair and girls in ponytails. I couldn’t recognise them individually, so I didn’t learn their names. I put it down to not fitting in. Back home in the holidays, I thought my ex-boyfriend had moved into a house in the next street. I chatted to him quite often, falling into step with him as we both walked towards the town. It took several weeks for me to realise that he was, in fact, a complete stranger.

It’s not just that faces don’t stick in my mind; they also shift beneath my gaze while people are standing in front of me, and I seem to only be able to perceive them in fragments that won’t piece together as a whole. I routinely struggle to identify those closest to me. The afternoon after my husband had his long hair cut short, I managed to stand next to him asking friends, “Has anyone seen H?” In the three years we lived apart while I was at university, I never could bring his face to mind.

I couldn’t pick out my own son from all the other little blond boys at nursery, and still now in the playground I often have to ask other parents if they can spot him. If I know them well, I can explain. If I don’t, I have an armoury of excuses. He moves too fast! He’s jettisoned his coat! He must have been hiding!

It is a shameful thing for a mother not to recognise her son, but then again I could sniff him out blindfolded in a crowd. I would know his voice anywhere, the way he walks, the perpetual motion of his face. This is how I remember people. I can do a lot of work with the flow of an upper lip as someone talks, with a gait, with the timbre of a voice. I can store certain people in words. There was a man at my last workplace whose moustache grew outwards like a rosette. It fascinated me anew every time I saw it, and I always recognised him, while routinely blanking the members of my team.

At least I knew what it was by then. I only learned the term in my mid-30s, when I read a tweet by Philippa Perry explaining her own face-blindness, and the embarrassment when she’s unable to identify seeming strangers at events. It was a heart-stopping moment for me; a spark of grateful recognition. “Is that an actual thing?” I replied. “An actual condition? I’m not just a terrible person?”

Now, when I mention it online, somebody usually pops up to tell me it’s actually called prosopagnosia, as if that makes any difference. The opaque scientific name does nothing to assist me, so I routinely forget the word like I’d forget a face. Research is in its infancy, but we know that face recognition is dependent on a network of brain regions across the right and left hemispheres. There is so much that can disrupt these connections, and so it’s likely that there are multiple ways of being face-blind.

I used to compare notes with my former colleague Carolyn Oulton, a professor of English literature whose ability to recognise people seems even more limited than mine. Carolyn sought a formal diagnosis in the hope of making her working life easier, but discovered that her disorientation extended to places and shapes, too. “I now know I can’t call it prosopagnosia because it’s broader than that,” she tells me. “I’m left saying ‘I’m bad with faces,’ which is exactly where I started.”

I’ve never bothered with a diagnosis. I’m not sure what it could do for me. There’s no treatment and certainly no cure. Even if there were, I’m not sure I’d take it. Strange as it seems, my face-blindness feels innate to me. Carolyn agrees: “I don’t know if I enjoy being face-blind, I just know that I’ve created a way of understanding it as part of the way I navigate life,” she says. “To change that would be like suddenly having a different name.”

However, another face-blind friend, who prefers to remain anonymous, would love to find a cure. “I’m an extrovert. I need people,” she says. “Face-blindness is a terrible blight on that. I’ve offended too many people by walking past them in the street, and I’ve spent too many parties thinking I don’t know anyone when I know plenty of people. I feel quite vulnerable around it.”

Perhaps that’s an insight into why I’m more accepting of my own face-blindness – it’s the perfect complement to my introversion; to my sense that I don’t really want to socialise anyway. The two conspire together – it’s the perfect pairing. I’m best off avoiding busy rooms, because they exhaust me, and my prosopagnosia relieves me of having to process all those different personalities.

I increasingly use my face-blindness as a sorting device. I tell people about it on our first meeting, and the way they behave after that reveals a lot. Some are touchingly helpful – one friend always finds a way to shoe-horn her name into the first sentence while I orient myself – but I’m surprised at the number of people who don’t think I’ll be blind to their face, uniquely. They seamlessly translate my face-blindness into a failure to love them enough, rather than a neurological difference. Disclosing it has become a reliable measure of people’s kindness, their neediness, their ability to put their ego aside.

But there are other things that leave me attached to it. Faces that I’m told are beautiful, the models and actors with compact features and perfect symmetry, all look exactly the same to me. They are frictionless, offering nothing on which I can anchor my gaze, and my eyes slide off them. I don’t understand why they are so lovable to everyone else. To me, they seem hard and resistant.

The faces I fall in love with are distinctive. They have broken noses and wrinkles, crooked teeth and diagonal smiles. They are individual. They signal wisdom, a life lived. I can’t help but be grateful for these faces. More than that, I recognise my loved ones just as intensely as a person who could bring their faces easily to mind. My sense of connection is multi-faceted, engaging all my senses, and it’s full of wonder, because each time I look at them, I am seeing something new. I know them no less deeply. I just find my home in a different way.

Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

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anxiety, blindness, charles bonnet syndrome, Depression, hallucinations, isolation, mental health issues, neuroscience, stress, treatment, visions, visually impaired

It was said:

Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

Estimated one million visually impaired people in UK are thought to experience bizarre ultra-lifelike hallucinations – including spiders crawling from books and Victorian families appearing in crowds.

The first time Dr Amit Patel saw the girl in his home he was so astonished he fell down the stairs.

“She was so vivid,” he remembers today. “I could see the detail on her dress. There was blood smeared on her face.”

A month earlier, in November 2012, the former A&E medic had gone suddenly blind after catastrophic haemorrhaging in both eyes.

As he attempted to negotiate a world without sight, the girl – or rather a crystal-clear vision of one; white dress, black hair, bloodied and bruised – appeared without warning. And she has been doing so ever since.

“I can be working, walking down the street, with the kids, and she’ll suddenly be there,” the 40-year-old father-of-two says. “She once watched me change my daughter’s nappy. She’s always on trains.”

This is Charles Bonnet Syndrome – and an estimated 1 million partially sighted and blind people in the UK are believed to live with it.

They see – often on a near daily basis – intensely real, hyper-detailed visions. Sometimes these are benign: flowers sprouting, musical notes hanging in the air or rainbows forming.

But for many – for reasons which nobody understands – the scenes come tinged with horror. Tarantulas crawl out of books, gargoyles appear amid friends, zombies turn up in homes. In an online post, one UK sufferer, describes seeing a person crumble to dust in front of them. Dr Patel likens his visitor to the girl in The Ring. “Used to love that film,” he says today. Now, he’s less enamoured.

“Something I hear a lot is it’s like being inside a horror movie,” says Judith Potts, founder of Esme’s Umbrella, the UK’s only charity dedicated to the condition. “People know it’s not real but they can’t switch it off. There is no cure. They cannot escape.”

A major study being carried out by neuroscientists at the University of Oxford will this summer begin investigating what might cause CBS. In doing so, they hope to, firstly, destigmatise an illness which many are believed to suffer with silently for fear their sanity may be questioned, and, secondly, lay the groundwork for finding an eventual treatment.

Crucially, while it has long been established that the syndrome is to do with the eye’s interaction with the brain – as opposed to being a form of psychosis or dementia – the research will aim to establish what exactly is happening within that process.

“It is so important,” says Ms Potts. “This affects every part of people’s lives. If you wake up in a morning and see a tiger in your doorway that’s so real you can see the saliva on its teeth – that’s just one example of someone I spoke to recently – if you see that, it is so terrifying that, even though you know it’s not real, the anxiety puts huge stress on your life.

“Some people won’t go out as much because they don’t want to have these visions in public, or they become depressed. They have accidents. You can imagine it’s rather distracting suddenly being confronted by a Victorian family as you walk down the street.”

She herself founded Esme’s Umbrella in 2015 because her mother – the Esme in question – had suffered with the condition but found nowhere to turn: “A wonderful lucid woman who did the cryptic crossword everyday but who also happened to see gargoyles jumping around her kitchen,” notes Ms Potts.

Charles Bonnet Syndrome itself was first identified in 1760 by the Swiss naturalist and philosopher whose grandfather – a sane and cogent man – confided in his grandson that he had started seeing birds he knew could not possibly be there.

Yet, perhaps, because the condition appears to cause no apparent physical or mental deterioration, research has been sparse and wider knowledge of it remains hugely limited.

Despite estimates that half of all visually impaired people in the UK suffer – a figure put forward by the King’s College London neuroscientist Dr Dominic Ffytche – most have never heard of it until they are diagnosed. It was only four years ago, indeed, that the Royal College of Ophthalmologists started advising its doctors they should ask patients as a matter of routine if they experienced hallucinations in a bid to better understand the syndrome.

The fact the visions are so often characterised by something vaguely dreadful is, one expert told The Independent, “beyond the current limit” of scientific understanding.

Stress, isolation and anxiety may spark the visions, some believe. But even this is open to interpretation – because the visions probably increase stress and anxiety levels.

“The first time it happened I thought I was losing my mind,” says Arthur Anston, a 71-year-old retired sales director, as he describes an unknown person suddenly appearing as he travelled in a car with his wife.

“They started very modern-looking, then their appearance went back in time – Victorian, Roman – until I had a prehistoric man looking at me,” he adds.

So scared was he that his son-in-law immediately took him to hospital. “No one ever told me when I started losing my sight this might happen,” the grandfather-of-two from Manchester says. “I’d never heard of CBS. All I knew was I was seeing something that no one else was. It was disturbing.”

It is a word commonly used by many of those diagnosed with the condition.

For Nina Chesworth, the first time she saw visions was just days after suffering the trauma of losing her sight during a home accident in 2018. Kaleidoscopic rainbows and coloured patterns suddenly appeared as she lay in hospital, eventually progressing, over the next few weeks, into unicorns.

“I’m a graphic designer by training,” the 38-year-old mother-of-one says. “So, I was a bit like, ‘Well, this is interesting’. I would observe all these colours and patterns. I found them comforting in a way. I still do sometimes.”

At one point she saw Danger Mouse. “I loved Danger Mouse,” she says. “That was lovely.”

Then, however, came the zombies and snarling dogs.

“I was sat on the sofa at home the first time,” the mother-of-one from Manchester recalls. “I was too scared to move for hours. It’s not like you can shut your eyes and stop seeing it. It stays right there in front of you.”

Now she has got used to the strange mix of visitors she is less concerned – “sometimes I sit studying them” – but they have caused her accidents, led to plans being cancelled and can make the world feel overwhelming.

“As a blind person you rely on all your other senses but when the visions start, they can take over,” she says. “They are incapacitating, even when it’s not bad stuff you’re seeing.”

It is for this exact reason that Esme’s Unbrella and the Fight For Sight charity are now funding the new research.

Pertinently, with 4 million people in the UK set to have some form of visual impairment by 2050 – a number which would result in a possible 2 million people with CBS – experts say it is more crucial than ever to get a grip on the syndrome.

“So much more needs to be done to understand this,” says Sherine Krause, chief executive of Fight For Sight. “With a better understanding of the causes, we will be one step closer to developing a treatment and a cure.”

The study will see some 20 people – 10 with CBS and 10 without – have certain chemicals in their brains measured and monitored over a period of time.

“By looking at that, we can see if there may be an imbalance in chemistry in the visional system that may be a cause of these really weird visions,” says Holly Bridge, a professor of neuroscience leading the study. “If we can establish that, then it can become possible lead to treatment because you could look to develop ways of changing those chemical balances. In the very long term, it may well be that you could develop an appropriate drug to keep those chemical levels in proportion.”

Early results will come within 12 months and a fully published paper within 18 – but a treatment, of course, might not arrive for years.

All the same, back with Amit in London – flanked by trusty guide dog Kika – he longs for the day when the girl from The Ring is no longer a regular visitor. He would not, it is safe to say, miss her.

“I was thinking the other day,” he says, “she’s been in my life longer than my children. It would be nice now to be rid of her”.

How mental distress can cause physical pain

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anxiety, Depression, depressive symptoms, diagnosis, distress, emotional distress, emotions, gastrointestinal issues, mental health issues, nausea, numbness, palpitations, panic, panic attacks, physical aches, physical pain, physical symptoms, psychological symptoms, stomach pains, stress

How mental distress can cause physical pain

It took Gemma* years to realise why she vomiting three of four times a week. She wasn’t suffering from some mysterious stomach illness. Instead, it was her mental health deteriorating.

“I have generalised anxiety disorder and panic disorder. I actually had physical symptoms first, long before I even knew what panic attacks or anxiety were,” the 24-year-old student based in London tells The Independent. “I suffer particularly badly from gastrointestinal issues. I spent years throwing up three or four times a week, ending up in hospital, with no real discernible ‘physical’ cause. The cause was anxiety, expressed physically.”

Gemma believes that her condition went undiagnosed for so long because of how mental and physical conditions are too often treated as mutually exclusive, when they are in fact inextricably linked.

“I think people very much misunderstand the link between physical and mental health,” she goes on. “I was one of those people. I didn’t even realise they could be connected when I was a teenager. I thought I was relaxed. Anxiety was the last thing I thought I was suffering from. But I was ignoring a lot of stress and was poor at acknowledging my own emotions. That stress had to come out somewhere, and I almost feel like it was my body trying to get me to listen.”

Now, Gemma knows that anxiety can cause her severe stomach pains. Or that panic attacks are what most often fill her stomach with nausea, cause her arms and legs to go numb, and her heart to palpitate.

Similarly, Courtney*, a 25-year-old publicist based in London, says her depression causes her to feel lethargic and sluggish and her bones and joints stiff and achy.

“The bigger problem with physical symptoms is for the anxiety side of things. Outside of panic attacks, a bad flare up of anxiety gives me absolutely stunning headaches with blurred or double vision, which often makes it hard to work – especially at a computer screen,” she tellsThe Independent.

And as the stigma of suffering from mental illness is talked about more widely, these comparatively nuanced aspects of understanding health are what need to be tackled next, say experts.

“The idea that mental illness is ‘all in your head’ is not only outdated, but can make us blind to the physical symptoms that can be a sign of mental health problems,” Rethink Mental Illness spokeswoman Nia Charpentier tells The Independent.

“For example, if you have anxiety, you may experience a fast heart rate and sweating; or for someone living with Post Traumatic Stress Disorder, the flashbacks can cause aches and pains, or make you feel sick. Similarly, depression can affect your appetite, causing you to either lose or gain weight.

Eating disorders such as bulimia and anorexia are perhaps the most obvious ways that serious mental illness can affect a person’s physical health.

“In the case of eating disorders, these illnesses may well involve physical symptoms that can become increasingly obvious over time, depending on the specific illness. However, it’s very important to remember that these are mental illnesses at their root, and changes to behaviour and mood will probably be noticeable long before any physical signs,” a spokesperson for the eating disorder charity B-Eat stresses. “It’s vital that people are aware of these psychological symptoms as well as the physical ones, as the sooner someone enters treatment for an eating disorder, the better their chance of recovery.”

It is erasing this confusing that spurs the Mental Health Foundation on to campaign for health check to include mental health screenings.

“Men in their forties are routinely screened for their blood pressure and cholesterol levels, when they are more at risk of ending their life by suicide,” points out Dr Antonis Kousoulis at the Mental Health Foundation, adding: “It’s crucial that health screening cover the health of our minds as well as the health of our bodies.”

*Name has been changed

How I recovered from the Body Dysmorphic Disorder which took over my life

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appearance, avoidance, body dysmorphic disorder, compulsions, Depression, distortion, perceived flaws, preoccupation, Therapy

How I recovered from the Body Dysmorphic Disorder which took over my life

While the poorly understood condition is often believed to be a simple case of people thinking they are larger or more unattractive than they are, it is actually a distorted view of how they look so much so they become preoccupied with it. It often involves focusing on one perceived flaw and the majority of people with the condition are preoccupied with an aspect of their face, but it can be about any body part. The illness involves avoidance and compulsions and it can have a significant impact on their daily life, becoming very debilitating. Affecting both men and women, the Body Dysmorphic Disorder foundation says the impact of the condition on a person’s life can be so severe they effectively become housebound. Many people who have the condition are also single or divorced, suggesting it is difficult to form or maintain relationships.

Dr Rob Willson from the foundation says around two per cent of the population are believed to have the condition, which usually starts in adolescence.

Omari, 29, told The Independent he can trace the origins of his BDD, which he was finally diagnosed with in 2012, to his 16th birthday. An aspiring model, he took part in a photoshoot  yet immediately before became increasingly “tormented” over the appearance of his eyes – so much so that he even resorted to using his mother’s make-up to try and camouflage them. Things worsened when he went back to look at the photos and the photographer retouched an area around his eyes.

“I was waiting to see the first action he did and he went to the eyes. That was immediately it there, my evidence […] looking back he touched up other things I’m sure but I don’t have that in my memory. All I have is a really vivid, burnt image of him blending the area of my eyes.”

A year after first experiencing BDD symptoms, it was when Omari began studying at Oxford University that they reappeared and took over his life. Studying a humanities subject where he was largely outnumbered by girls and therefore admittedly “in his element” after attending a same sex school, Omari put pressure on himself for everybody to like him.

“I wanted to be the guy all the guys wanted to be and all the girls wanted to be with,” he says. The BDD obsession around his eyes continued and deteriorated to the point he feared not wearing glasses as his eyes would be exposed. One perfectly innocent comment from a girl he liked is something that stands out in his memory: “She said something like: ‘I like you in your glasses’ But what I heard was: ‘Thank god you put your glasses on’ and thought it was code for ‘Jesus, about time, it was horrible to look at you before now.’”

Part of the issue with BDD, Omari explains, is that you actually feel that you are a burden on people because of your appearance. “Part of it is: ‘If I go outside, I will make little children run away from me’.

Wearing his glasses became what is known as a ‘safety behaviour’ which are mental or physical acts aimed at reducing the threat of the perceived flaw, according to Dr Willson. “Examples of this might be checking or examining ones appearance in the mirror, avoiding bright light, avoiding being seen up close, concealing perceived flaws using make-up or seeking cosmetic or dermatological procedures.”

“My main issue was the bags under the eyes but then also the issues of them generally being a weird shape and being evil or looking dead and glassy, so many things really, but the day-to-day issue was worried about the bags and looking tired,” he explains. “There were mornings when I would get ‘dry eyes’ … I wouldn’t leave the room I shared with my best friend and would wait for him to leave. I would sit there getting more and more tense and feeling resentful towards him about not leaving. Then I would hear the door close and I would freak out, begin throwing stuff around, punching walls – everything short of properly screaming basically.

“My glasses became a permanent feature… it really limited my life as I was always active and sporty and couldn’t wear them for football or rugby. There would be days where I would put my contacts in and then put my glasses on top and I couldn’t see any more…. I had to look below the level of the glasses so I wouldn’t fall over. I would bump into someone and have these conversation where I had to pretend I was making eye contact with them, meanwhile they’re a complete blur and I would be getting headaches because my vision was really messed up.”

Further safety behaviours would extend from the accessories he wore to the words he spoke. “I would avoid phrases with the word ‘eye’ in it,” he explains. “I would never say ‘I’ve got my eye on you’ as I was worried that would trigger people to look at my eyes.”

Additionally, he avoided mirrors: “I would go weeks without looking in a mirror or I would only look in one if I had sunglasses on or I found a way to squint so I could never properly focus on my eyes.”

Omari dealt with the thoughts in his head alone for a very long time, scared that if he repeated them aloud they would be met with confirmation from others.

“At that time, I didn’t see any way I could talk to anybody about it because in my head if I told them then they would confirm it. There was a small part of me that thought ‘If I don’t talk about it maybe it’s not real or I’m getting away with it. I’m definitely not going to draw their attention to it’.”

This led him to withdraw from people leading him to sink into a “very deep depression” which he believes was made worse by feeling like he was pretending to everybody. In addition to struggling with the thoughts on his own, Omari felt like a “fake” and would beat himself up about the fact he was presenting a confident external persona yet suffering on the inside.

Eventually, his mother caught him in the midst of a near-breakdown and he told her about his BDD thoughts. However, for a while this strained relations between them as Omari pushed her away for fear she would confirm the thoughts.

“My thinking was that she was my mum and loves me unconditionally and thinks I’m beautiful but if she doesn’t then that must mean I really am hideous… I pushed her away and couldn’t talk to her about it at the time, I have since.”

Omari found out he had BDD when he was 21 after reading an article about the condition. He says most others he knows with the illness also “stumbled upon it” and the symptoms were not identified by a health professional.

After discovering he had the condition, he signed up for a trial of intense therapy dedicated to the illness where he learned to overcome the thoughts and tackle the safety behaviours and compulsions.

Therapy helped and he began to take up hobbies like dancing which he says has also helped with his recovery. Writing a book and tutoring students foreign languages, he now says he is in a good place and his life is “hugely on track now”.

He is currently in the midst of a social media campaign called “In the face of BDD” where he is taking a photo of himself – in any situation and with no filter, edits or retakes – every single day for a year and sharing it on Instagram to raise awareness of the condition and money for the BDD foundation.

“It’s sad because I look back on the years and at family photos and I’m not in any of them. I either made excuses and got away or, more likely, I wasn’t at the event,” he says solemnly.

But now, with his life back on track, he wants to help others overcome the condition.

“Recovery from BDD really is possible. It is a journey. The first step is talking about it and the second is realising that when you do you’re fine.

Quipu: Calls for Justice

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forced sterilisation, Peru, sterilisation, women

Pregnancy and mental health: the hidden pain of giving birth

Check out this post here: Pregnancy and mental health: the hidden pain of giving birth

Childless at 52: How sweet it would be to be called Dad

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childless, Children, disconnection, family, Grief, loss, men, regret, women

Childless at 52: How sweet it would be to be called Dad

A few years ago, I was visiting a friend who has two daughters, a newborn and a two-year-old. Reflecting on his experience of being a father he said that he felt he loved them so much he could “take a bullet for them”. I wept all the way home. If only I could feel that intensely. And here I am, a man who would love to have a child, wondering how I let this happen.

Some people surmise, “It’s different for men. You don’t have a biological clock.” And that’s pretty much the end of the discussion. As a 52-year-old man, can I know something of the anguish of women who long to have a child? The biological clock is, after all, a reality for women – I could theoretically still have a child if I were 70.

The problem is that “it’s different for men” translates easily into “it’s easier for men” and it’s one small step more to “you can’t understand what it’s like for us!” And from this the debate about not having a child is sequestered firmly into the experience of women: women grieve for the children they longed for and men don’t. Maybe that’s true – I can’t claim to be surrounded by men who talk about this. I think that by and large we don’t.

I am not sure what I am allowed to feel and how that differs from what I actually feel. Do men feel grief over being childless differently from women? If so, how? Does it matter?

Daily encounters remind me of what I don’t have. Just this morning, returning from the local shop, I saw my neighbour standing outside the door of our mansion block. Our building is set back off the road and has a communal garden bordered by hedges. There she stood with her two tiny ones, a little boy and girl gazing curiously at the pearled intricacies of a spider’s web spun across the lower branches of our hedge. I say good morning to their mother and then to them. I crouch down to join their wonder, and agree with their mother that probably the mummy spider was having a rest after her hard work and we should not disturb her. I watch their faces, their cheeks the lustre of rose petals, full of wonder at the spectacle. Adorable.

Shopping isn’t easy either. Politely standing aside for the harassed family of four as they pass, trying to manage the strollers, the shopping and the children’s runaround energy, I feel socially inferior. Despite loving my job and enjoying strong friendships, I feel I am not a real member of society – an unmarried man without children. I can’t participate in the hullabaloo about schools, catchment areas, snotty noses, and playdates. I am outside, looking in.

How do I disentangle these feelings? It’s easy just to distract myself. I think the most accessible layer of feeling is a sense of regret – I remonstrate with myself for the chances I missed and sadness for the people I have hurt. I can’t help but replay moments in my life that I wish could have turned out differently. These are so painful. That evening six years ago when I managed in one short hour to say all the wrong things to the right woman, precisely because she was the right woman. I could not bear to have that which I most wanted. So I destroyed something that I really longed for.

Only a few days later, she met someone else and two years later got married. They have a child now. I really wish I didn’t know that. But I do. A little girl. And I can’t help but wonder what it would be like if that little girl were my little girl. Would she have my eyes? My smile? What is it like to see in a child little mannerisms, a way of doing things, moving, speaking, laughing, playing, that remind us of ourselves? Or of course, she may have the eyes of my loved one. And what a joy that would be, to see in our child’s face, our love; to bring into this world a beautiful child that was of us – a child that would grow into her own person but growing out of who we are.

So another part of my sadness is born out of absence – fearing that I will never feel those exquisite joys; that I will never hear my son or my little girl call me dad. How sweet it would be to hear that word from the mouth of my little girl or my small son. To see them take first steps, to comfort them when they cry, to tuck them in before sleep and read them stories. To kiss them goodnight and be with them when the world seems too much. It could still happen. But it feels less likely with each passing year. And just because theoretically I still could doesn’t mean I don’t feel the loss of all those could-have-beens. Also, with the passing of the years, would I now have the energy if it were to happen?

And what of those parents who might answer me and say, “this guy is clueless. Does he have any idea of how hard it is to be a parent?” No. I don’t. I don’t know what it’s like to be short of sleep for a decade. To be exhausted and overwhelmed and have no time for myself. To feel mind numb after reading the same story for the 20th time. No, I don’t understand these things. But I do know what it is like to feel incomplete. To be fit for a purpose that I cannot fulfil. I will probably never know if I could bear the exhaustion and sacrifice that being a father would require but I long to try, precisely because that is the only way I can express something essential about who I am. It is not simply that I would like to be a father. I feel I am made to be a father. And because I don’t have a child, and it saddens me very much to admit this, in some ways I don’t feel fully like a man.

Sometimes, however, I get invited into the club. Four-year-old Archie arrived with his mother, Maggie, for a gathering of friends yesterday. Of course, he didn’t so much arrive as explode through the door. “I’m here!” he shouted as he ran into the hallway. While we adults exchanged smiles, Archie pulled out a dozen assorted soft toys, including a penguin, a lion, a giraffe and a hippopotamus, and left them strewn around the living room floor where he set up camp – a play base from which to launch sorties of boy energy into the kitchen.

Under his arm, too large and perhaps too fierce for any bag, is a pink Tyrannosaurus rex. The first chance I got, I served up food and went to play with him. Once we agreed that Captain America really was the best superhero, we were firm friends for the day, and Lego building and soft toy wars could ensue. Later, as we walked to the local cafe for tea and cake, he took my hand. For so many parents, this must be commonplace – to feel a small hand neatly clasped around the fingers of an adult – but for me it was special. His mother and I swung him, one, two, three, and up he went, until our arms were tired. An afternoon replete with the small joys of spending time with a little boy as he negotiates his way through the world.

And then they go home.

 

Think loneliness is about single people looking for love? Think again

Tags

disconnection, loneliness, lonely, Marriage

Think loneliness is about single people looking for love? Think again

It’s hard to feel alone inside a long and happy marriage. But it’s easier than it looks, perhaps, to feel lonely. Last week, Italian police officers responding to reports of screaming and crying inside an apartment in Rome found something unexpected behind the door. Jole and Michele were a devoted elderly couple who had ostensibly got themselves worked up over a sad story on the TV news, but some gentle questioning elicited the fact that both were struggling with terrible loneliness. After 70 years of apparently loving marriage they still had each other, and yet that clearly was not enough.

This being Italy, the officers rather charmingly cooked them a meal of spaghetti with butter and parmesan and stayed to chat, before doing the washing up and posting a flowery account on Facebook of how loneliness can suddenly sweep over you “like a summer storm”. The story went viral because it’s so heartwarming, and yet on second reading it’s also rather unsettling. The lonely are not quite the people we think they are.

It will be 20 years ago this summer that the first Bridget Jones novel was published, a timely reminder to ignore the spectacularly awful sequels and remember just how neatly the original skewered some of the myths about lonely singleton life.

Bridget was famously terrified of dying alone and forgotten, but ironically the one thing she wasn’t was lonely: she was riotously surrounded by friends and family, even if they did all keep harping on about her getting a proper boyfriend. It’s smug marrieds who can all too easily collapse in on themselves, severing old friendships they will come to regret in the process. (Anyone who thinks that having a baby means you’ll never feel alone again, meanwhile, has yet to find out how it feels to be home with a howling infant, desperately trying to engage the postman in conversation because he’s the only sentient adult you’ll see for hours.)

It’s all too easy to become consumed by family life and then wake up in middle age, ostensibly at the centre of a rich and busy life, struggling to remember your last meaningful conversation. That feeling may not be loneliness yet, but it’s a first step on the road.

For while the cavernously empty feeling endured by the bereaved or unwillingly single can indeed be a terrible thing, and life-shortening to boot, it’s not the only kind of loneliness. A recent University of California study found that while almost half of its elderly subjects confessed to feeling lonely at times, only 18% of them actually lived alone.

Unhappy marriages, atrophying into long silences and separate lives, might have something to do with that, but the story of Jole and Michele suggests something else: a distinct kind of loneliness stemming not from the absence of significant others but from a feeling of disconnection with the wider world, a sense that you’re no longer part of something shared and human. Is it just a coincidence that the Italian couple’s crisis seems to have been provoked by a run of news stories – violent attacks, abuse at a kindergarten – revealing human nature at its coldest?

Fleeting loneliness comes to all of us occasionally, but it solidifies into something deeper and darker for those who start to perceive the world as a harsh and hostile place, one that wouldn’t welcome efforts to connect even if you try. It’s that nagging feeling of rejection, of not belonging or standing somehow apart from others, that is the true hallmark of feeling lonely in a crowd, and it’s by no means the preserve of the old.

Interestingly, a recent Brunel University study of over-50s found more than half of those identifying themselves as lonely had been that way for over 10 years, suggesting the feeling had become part of the fabric of their lives. (The same study, by the way, found levels of loneliness had barely changed since the second world war; so much for the idea of a modern epidemic, caused by fragmenting and hectic modern family lives.)

So perhaps it’s not so surprising that this week’s obituaries of the fabulously wealthy Duke of Westminster, a father of four, should describe him as “lonely”. Immense wealth can of course be isolating – although the money clearly didn’t make the duke unhappy enough to get rid of it, or indeed to eschew the family tradition of minimising inheritance tax liabilities – but in Gerald Grosvenor’s case something else seems to be going on. What emerges is a picture of a man struggling all his life with feelings of inadequacy and anxiety, worried that he had done nothing to live up to the reputation of those ancestors who built his unearned fortune. Bullied at school, he reportedly left Harrow without one proper friend.

And if you can’t bring yourself to feel sorry for a billionaire, the blunt truth is that not all lonely people are lovable old grannies who tug at your heartstrings. An unhappy few have pushed others away with their self-destructive behaviour and are now paying a high price for it; some have struggled bitterly all their lives with the art of making friends, never quite mastering social norms. How much of the late-night bile spewed on social media simply reflects the envy and frustration of those who see other people happily connecting all around them and just don’t quite know how to join in? Loneliness has its dark side, one not so easily solved by more visits from the grandchildren or well-meaning volunteer “befrienders” popping in for chats over coffee.

For Jole and Michele, at least, perhaps there will be a happy ending. Now their story has been made public, perhaps surviving relatives or old friends will rally round, and if nothing else the knowledge that strangers worldwide are now asking how they can send letters or visit must do something to restore their faith in human nature.

Yet while a little kindness goes a very long way, it’s too easy to pretend loneliness can all be solved by a few more companionable plates of spaghetti. It makes for a less heartwarming story but the truth is that, like the poor, the lonely may to some degree always be with us – even, perhaps, when they’re ostensibly with someone else.

What does depression feel like? Trust me – you really don’t want to know

Tags

Depression, emotions, experience, support, symptoms

What does depression feel like? Trust me – you really don’t want to know

This is Depression Awareness Week, so it must be hoped that during this seven-day period more people will become more aware of a condition that a minority experience, and which most others grasp only remotely – confusing it with more familiar feelings, such as unhappiness or misery.

This perception is to some extent shared by the medical community, which can’t quite make its mind up whether depression is a physical “illness”, rooted in neurochemistry, or a negative habit of thought that can be addressed by talking or behavioural therapies.

I’m not concerned about which of these two models is the more accurate. I’m still not sure myself. My primary task here is to try to explain something that remains so little understood as an experience – despite the endless books and articles on the subject. Because if the outsider cannot really conceptualise serious depression, the 97.5% who do not suffer from it will be unable to really sympathise, address it or take it seriously.

From the outside it may look like malingering, bad temper and ugly behaviour – and who can empathise with such unattractive traits? Depression is actually much more complex, nuanced and dark than unhappiness – more like an implosion of self. In a serious state of depression, you become a sort of half-living ghost. To give an idea of how distressing this is, I can only say that the trauma of losing my mother when I was 31 – to suicide, sadly – was considerably less than what I had endured during the years prior to her death, when I was suffering from depression myself (I had recovered by the time of her death).

So how is this misleadingly named curse different from recognisable grief? For a start, it can produce symptoms similar to Alzheimer’s – forgetfulness, confusion and disorientation. Making even the smallest decisions can be agonising. It can affect not just the mind but also the body – I start to stumble when I walk, or become unable to walk in a straight line. I am more clumsy and accident-prone. In depression you become, in your head, two-dimensional – like a drawing rather than a living, breathing creature. You cannot conjure your actual personality, which you can remember only vaguely, in a theoretical sense. You live in, or close to, a state of perpetual fear, although you are not sure what it is you are afraid of. The writer William Styron called it a “brainstorm”, which is much more accurate than “unhappiness”.

There is a heavy, leaden feeling in your chest, rather as when someone you love dearly has died; but no one has – except, perhaps, you. You feel acutely alone. It is commonly described as being like viewing the world through a sheet of plate glass; it would be more accurate to say a sheet of thick, semi-opaque ice.

Thus your personality – the normal, accustomed “you” – has changed. But crucially, although near-apocalyptic from the inside, this transformation is barely perceptible to the observer – except for, perhaps, a certain withdrawnness, or increased anger and irritability. Viewed from the outside – the wall of skin and the windows of eyes – everything remains familiar. Inside, there is a dark storm. Sometimes you may have the overwhelming desire to stand in the street and scream at the top of your voice, for no particular reason (the writer Andrew Solomon described it as “like wanting to vomit but not having a mouth”).

Other negative emotions – self-pity, guilt, apathy, pessimism, narcissism – make it a deeply unattractive illness to be around, one that requires unusual levels of understanding and tolerance from family and friends. For all its horrors, it is not naturally evocative of sympathy. Apart from being mistaken for someone who might be a miserable, loveless killjoy, one also has to face the fact that one might be a bit, well, crazy – one of the people who can’t be trusted to be reliable parents, partners, or even employees. So to the list of predictable torments, shame can be added.

There is a paradox here. You want the illness acknowledged but you also want to deny it, because it has a bad reputation. When I am well, which is most of the time, I am (I think) jocular, empathetic, curious, well-adjusted, open and friendly. Many very personable entertainers and “creatives” likewise suffer depression, although in fact the only group of artists who actually suffer it disproportionately are – you guessed it – writers.

There are positive things about depression, I suppose. It has helped give me a career (without suffering depression I would never have examined my life closely enough to become a writer). And above all, depression, in nearly all cases, sooner or later lifts, and you become “normal” again. Not that anyone but you will necessarily notice.

But on the whole it’s a horror, and it’s real, and it deserves sympathy and help. However, in the world we live in, that remains easier to say than do. We don’t understand depression partly because it’s hard to imagine – but also, perhaps, because we don’t want to understand it.

I have a suspicion that society, in its heart of hearts, despises depressives because it knows they have a point: the recognition that life is finite and sad and frightening – as well as those more sanctioned outlooks, joyful and exciting and complex and satisfying. There is a secret feeling most people enjoy that everything, at a fundamental level, is basically OK. Depressives suffer the withdrawal of that feeling, and it is frightening not only to experience but to witness.

Admittedly, severely depressed people can connect only tenuously with reality, but repeated studies have shown that mild to moderate depressives have a more realistic take on life than most “normal” people, a phenomenon known as “depressive realism”. As Neel Burton, author of The Meaning of Madness, put it, this is “the healthy suspicion that modern life has no meaning and that modern society is absurd and alienating”. In a goal-driven, work-oriented culture, this is deeply threatening.

This viewpoint can have a paralysing grip on depressives, sometimes to a psychotic extent – but perhaps it haunts everyone. And therefore the bulk of the unafflicted population may never really understand depression. Not only because they (understandably) lack the imagination, and (unforgivably) fail to trust in the experience of the sufferer – but because, when push comes to shove, they don’t want to understand. It’s just too … well, depressing.

What is Cotard’s syndrome? The rare mental illness which makes people think they are dead

Tags

Cotard's syndrome, delusion, denial, self-existence, Walking Corpse Syndrome

What is Cotard’s syndrome? The rare mental illness which makes people think they are dead

A rare mental illness can make the sufferer believe they are dead, partly dead or do not exist.

Chronicled in the Washington Post by Meeri Kim, Cotard’s syndrome — sometimes dubbed ‘Walking Corpse syndrome’ — is a condition where patients believe they are dead, parts of their body are dead or that they do not exist. Any evidence to support the fact they are alive is “explained away” by sufferers, according to the Post.

It is not classified under the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) but is recognised as a “disease of human health” in the International Classification of Diseases. According to Mind: “It is linked with psychosis, clinical depression and schizophrenia”.

A spokeswoman for Mind told The Independent the syndrome was “certainly rare”.

“Cotard’s syndrome is a type of delusion that is usually associated with denial of self-existence,” she said.

“The person experiencing the delusion might believe that they are dead, dying, parts of their body do not exist or they do not need to do activities to keep themselves alive (drink, eat, basic hygiene etc.)”

French neurologist Jules Cotard identified the first case in the 1800s. He described a woman suffering from the condition as affirming “she has no brain, no nerves, no chest, no stomach, no intestines… only skin and bones of a decomposing body”.

Esmé Weijun Wang spoke to the Post about her experience of the condition, which she suffered from for two months, explaining that after weeks of losing “her sense of reality” she woke up and told her husband she had actually died a month before, when she had fainted on a plane.

She said: “I was convinced that I had died on that flight and I was in the afterlife and hadn’t realised it until that moment.”

Ms Wang, who was previously diagnosed with a form of bipolar-type schizoaffective disorder, later recovered and “no longer saw herself as a rotting corpse”.

A Mind spokesperson said “in terms of prevalence, there seems to be very few studies” meaning it is difficult to assess how many people are affected by the condition.

The Washington Post says “what causes Cotard’s syndrome and other delusions is a matter of debate” and speculates on a range of possibilities including brain impairment.

Professor and clinical psychologist Peter Kinderman told The Independent: “This syndrome is extremely rare so there’s not much known about it, most literature on it is individual case studies over many years.”

He says one theory about the condition’s cause is that when “conditions exist to make someone feel confused or distressed” the individual can combine all their thoughts and beliefs – some of which may be distressing and unusual, with the feeling that they don’t recognise themselves.

He said this could mean “people come up with the best conclusion they can to explain the experiences they’re having, which may be that they’re dead.”

In 2013, a British man called Graham was interviewed in the New Scientist. He was diagnosed with Cotard’s syndrome after believing his “brain was dead”. He believed he had killed it after a suicide attempt following severe depression.

Graham said he visited a graveyard during this time as “it was the closest I could get to death”.

He said: “I didn’t need to eat, or speak, or do anything.”

Graham’s condition gradually improved with psychotherapy and drug treatment.