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

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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.

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

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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.

Body dysmorphic disorder: charity video reveals the image anxieties that can push people to the edge

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anxiety, appearance, BDD, body dysmorphic disorder, cbt, Depression, diagnosis, distress, isolation, medication, misdiagnosis, physical appearance, professionals, suicide

Body dysmorphic disorder: charity video reveals the image anxieties that can push people to the edge

It is a treatable condition suffered by at least 2% of the population, both male and female, that devastates the lives of those who have it and can lead to prolonged depression and even suicide. Now a fledgling charity, the Body Dysmorphic Disorder Foundation, hopes to raise awareness of the obsessive anxiety condition that leaves people convinced there is something flawed or “ugly” about their looks.

The foundation’s first conference, on 30 May in London, is aimed at health professionals, body dysmorphic disorder (BDD) sufferers and their carers, and is being promoted by a two-minute film, You Are Not Alone, directed by Steve Caplin, which tackles one of the greatest issues surrounding BDD: the idea that the person with it is isolated and cannot fit in.

“One of the biggest problems is that this is an under-researched disorder which is not fully understood by either professionals or laymen,” says clinical psychologist Dr Annemarie O’Connor, director of themindworks, a London-based psychology practice, who will be running a workshop at the conference. “This is not simply a case of feeling low or having to change your clothes a couple of times before you go out. It’s an obsessive anxiety disorder which can lead to huge levels of distress.”

That distress in turn can lead to prolonged bouts of depression and often suicide. “There’s such a high level of hopelessness and a real conviction among sufferers that they are ugly to look at or flawed,” explains O’Connor.

“Many sufferers turn to cosmetic intervention, but when that doesn’t change how they feel or how they see themselves. They become utterly convinced that a better way doesn’t exist, and this makes suicide a real feature of the disorder.”

Robert Pattinson, who was catapulted to fame after getting the role of vampire Edward Cullen in the Twilight films, told Australia’s Sunday Style magazine that he suffers from anxiety and BDD issues, which can become crippling before a red-carpet event.

“I get a ton of anxiety, right up until the second I get out of the car to the event, when suddenly it completely dissipates,” said Pattinson. “But up until that moment I’m a nutcase. Body dysmorphia, overall tremendous anxiety. I suppose it’s because of these tremendous insecurities that I never found a way to become egotistical. I don’t have a six-pack and I hate going to the gym. I’ve been like that my whole life. I never want to take my shirt off.”

Scarlett Bagwell’s 19-year-old daughter, Alannah, first began exhibiting signs of BDD at the age of 14. “I noticed that she had lost a lot of weight fast and at first I thought it was anorexia, but then other things began to happen – she would refuse to come out with us, didn’t want to leave her room … I still thought it might be teenage angst, but then one day she dropped out of school, despite having always loved it.

“There was so much turmoil in her head – she couldn’t get on the bus, I’d drive her to school but she wouldn’t go in. She really wanted to, but she couldn’t physically get out of the car. She’s a beautiful girl, but she was convinced there was so much wrong with her – she’d insist that her nose was too big and deformed, that she had tiny, piggy eyes and funny hair.”

As Alannah’s condition worsened, including bouts of self-harm and suicide attempts, so her family struggled to get a diagnosis. “I had to fight the system to get the proper treatment for her,” says her mother. “Just getting a diagnosis was so hard and meanwhile Alannah went from being very independent to being a baby again. At times I even had to force her to wash and I would wash her hair for her. Everything was a struggle. I felt I was failing my daughter.”

The hard-won key to her recovery was a combination of cognitive behavioural therapy (CBT) specifically tailored for BDD sufferers and anti-depression medication.

Alannah is now sitting her A/S exams at a local college and intends to go to university. Her mother hopes that the establishment of a regular conference will lead to further understanding, help and support for those with BDD. “I think that because everybody has slight issues with their appearance – they don’t like their hair, or they think a particular dress makes them look bad – they can’t understand the struggle that actual body dysmorphics go through,” she says. “It stops you functioning. People with body dysmorphia are very isolated; they often can’t bring themselves to go out, no matter how much they want to, they don’t want to be seen.

“We were lucky that Alannah has had help and the support of her family, but I wonder how many people struggle without that support because they are diagnosed later, undiagnosed or misdiagnosed,” she said.

Exporting trauma: can the talking cure do more harm than good?

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civil war, community, coping strategies, counsellors, crisis, cultural insight, cultural practices, culturally sensitive, culture, Depression, Genocide, group therapy, interventions, mental health issues, NGOs, post traumatic stress disorder, psychological therapy, psychosocial, PTSD, rape, talking therapy, traditional, trauma, treatment, tsunami, well-being, western

Exporting trauma: can the talking cure do more harm than good?

A few years ago Andrew Solomon had to get into a wedding bed with a ram. An entire village, taking a day off from farming, danced around the unlikely couple to a pounding drumbeat, draping them both in cloth until Solomon began to think he was going to faint. At this point the ram was slaughtered along with two cockerels, and Solomon’s naked body was drenched in the animals’ blood, before being washed clean by the village women spitting water onto him.

Solomon had been taking part in a traditional Senegalese ceremony to exorcise depression as research for his book The Noonday Demon. “I discovered that depression exists universally, but the ways that it’s understood, treated, conceptualised or even experienced can vary a great deal from culture to culture,” he says now. He describes being the subject of the ceremony as “one of the most fascinating experiences of my life”.

When in Rwanda, interviewing women raising children born of rape for another book, Solomon mentioned his experience in Senegal to a Rwandan man who ran an organisation helping these women. The Rwandan told Solomon they had similar ceremonies in his country and that the disconnect between the western and traditional approaches to treating mental health had caused problems in the immediate aftermath of the genocide. “Westerners were optimistically hoping they could heal what had gone wrong,” says Solomon. “But people who hadn’t been through the genocide couldn’t understand how bad it was and their attempts to reframe everything were somewhere between offensive and ludicrous. The Rwandan felt that the aid workers were intrusive and re-traumatising people by dragging them back through their stories.”

As the Rwandan, paraphrased by Solomon, puts it: “Their practice did not involve being outside in the sun where you begin to feel better. There was no music or drumming to get your blood flowing again. There was no sense that everyone had taken the day off so that the entire community could come together to try to lift you up and bring you back to joy. Instead they would take people one at a time into these dingy little rooms and have them sit around for an hour or so and talk about bad things that had happened to them. We had to ask them to leave.”

The best way to improve mental health after a crisis is something NGOs working in Ebola-hit countries are currently considering. International Medical Corps (IMC) recently released a report assessing the psychological needs of communities affected by the disease. IMC’s mental health adviser Inka Weissbecker is aware that they must avoid previous mistakes by international NGOs. “Whenever there is a humanitarian crisis agencies flood in,” she says. “Though with good intentions, counsellors turn up from the UK [for example] and often create more problems … It’s a very foreign concept in many countries to sit down with a stranger and talk about your most intimate problems.”

During the recovery from Haiti’s earthquake five years ago mental health researcher Guerda Nicolas was even stronger in her message to American counsellors who wanted to ease the trauma of survivors. “Please stay away – unless you’ve really, really done the homework,” she said. “Psychological issues don’t transcend around the globe.”

The fact is that different cultures have different views of the mind, says Ethan Watters, the author of Crazy Like Us: The Globalization of the American Psyche. “In the west a soldier coming home might be troubled by their battlefield trauma. They think of the PTSD [post-traumatic stress disorder] as a sickness in their mind and they take time away from responsibilities to heal. That makes sense to us and it’s neither wrong nor right but conforms to our beliefs about PTSD. For a Sri Lankan, to take time away from their social group makes no sense because it is through their place in that group that they find their deepest sense of themselves.”

While researching his book Watters spoke to anthropologists who had in-depth knowledge of Sri Lanka’s culture and history. They said that western approaches after the tsunami had done real damage in the country where there were certain ways to talk about violence due to the long-running civil war. He says: “Into that very delicate balance came western trauma counsellors with this idea that the real way to heal was truth-telling, where you talked about the violence and emotionally relived it. That’s a western idea, it makes sense here, but it does not make sense in these villages. It had potential to spark cycles of revenge violence.”

International NGOs describe dealing with the mental health of a community after a disaster as the “psychosocial” response – meaning caring for individual and collective psychological wellbeing. The UN advertises dozens of jobs under this keyword and the American Red Cross says that since the 2004 Boxing Day tsunami there has been “increasing recognition of the need for psychosocial responses”. It also says – perhaps implicitly acknowledging that mistakes have been made in the past – “we are still in the process of identifying and documenting good practices”.

As awareness has grown that the western talking cure is not always the answer, global organisations have tried to find better ways to help. In 2007 WHO issued guidelines to advise humanitarians on their work to improve mental health and psychosocial wellbeing in emergencies. Coordination between the organisations working in the post-disaster zone as a key recommendation. Weissbecker says that this is crucial. “We reach out to organisations who might not know about the guidelines to coordinate,” she says. “It’s part of every agency’s job to watch out for other organisations doing this kind of work.”

The guidelines also stress learning local cultural practices. IMC now always start with an initial assessment that looks at the understanding and treatment of mental health that exists in that country before putting any programmes in place. “We usually don’t provide direct mental health services to the affected population because we feel that most of the time that’s not culturally appropriate and not sustainable,” says Weissbecker. In many communities, she has been impressed with indigenous coping strategies. “In Ethiopia people say depression is related to loss,” she says. “So the community takes up a collection and they all give them something. This is very positive.” IMC meets with traditional healers and builds up relationships with them.

Many argue that for some mental illnesses western expertise can be genuinely helpful. In Ethiopia Weissbecker’s team discovered a man with schizophrenia who had been tied up in a goat shed for seven years. “Once this family was connected to our services he started taking medication was unchained and participating in family life,” she says. “The father held up the chains to the community and said, ‘look I used these chains on my son and now he’s part of the family again’. People will throw stones because they are understandably frightened [of people with severe conditions].”

The Rwandan that Solomon met questioned whether talking therapy helped survivors of the Rwandan genocide. “His point of view was that a lot of what made sense in the west didn’t make any sense to him,” says Solomon. But Survivors Fund, a British NGO that works in Rwanda, has found that western-style group therapy sessions have really helped women who were raped. “It’s 20 years since then but many of the women our groups have never told their story before,” says Dr Jemma Hogwood who runs counselling programmes for the charity. “A lot of women say it’s a big relief to talk,” she says.

Hogwood has been working in Rwanda for four years but hasn’t heard of traditional ceremonies like the one described by Solomon. The group therapy sessions incorporate local practices such as praying before and after, as this is something the women wanted to do. Weissbecker adds that one-on-one therapy with expats can help people who have experienced extreme violence, rape or torture. “Some of them want to talk to foreigners because they don’t trust people in their communities,” she says. “So then it’s also important for them to have that one-on-one option.”

Some feel that aid should be focussed on food, medicines, shelter, and stay away from mental health. International relations academic Vanessa Pupavac has researched the effect of the war in former Yugoslavia, and has argued that “trauma is displacing hunger in western coverage of wars and disasters … Trauma counselling, or what is known as psychosocial intervention, has become an integral part of the humanitarian response in wars.” The problem with this, she believes, is that blanket-defining a whole population as traumatised becomes “a reinforcing factor that inhibits people from recovery”. Her recent work with Croatian veterans found that the PTSD label stops them from moving on with their lives and contributing to society.

“There are more Croatian veterans on post-traumatic stress disorder pensions now than there were ten years ago,” she tells me. “The international-PTSD-framing of people’s experiences has not only inhibited recovery but has also created social, economic and political problems for postwar Croatia.” She believes NGOs should stop psychosocial programmes altogether because they disrupt communities’ own coping strategies.

But this point of view is rejected by Weissbecker and her colleagues, who don’t accept “the romantic idea that without intervention everything will be fine”. The response to mental illness in many countries is often harmful, she says: “Psychotic patients are chained. Children with developmental disorders are at risk of abuse. Mothers with depression have a higher risk of malnourished children. People with anxiety are often given benzodiazepines which can be very addictive.” The solution, Weissbecker says, is to bring together global and local expertise.

The best experts to bridge the gap between international and local experience are those who might not have a health or psychology background, but have deep knowledge about cultural differences: anthropologists. Since the Ebola outbreak there is a growing recognition of this discipline’s role in emergencies. The American Anthropological Association has asked its members to become more involved in the west African countries hit by the disease. It argues that if anthropologists had been more involved from the start of the outbreak more people wouldn’t have caught the disease due to misunderstandings over traditional burials and conspiracy theories about westerners spreading the illness.

Médecins Sans Frontières (MSF) has employed anthropologists to inform their work for years but one of them, Beverley Stringer, says there’s been a “surge” in interest in what they can offer humanitarian work. “I was at a seminar at the Royal Anthropology Institute recently where they said ‘finally the humanitarian world is interested in our perspective’,” she says. “They’re quite excited about that.”

But Stringer warns that getting anthropologists to work for NGOs should not just be a case of parachuting in an expert; aid workers and volunteers on the ground need to recognise that their own experience gives them insight. “If mums aren’t coming to get their kids vaccinated you don’t need to be an anthropologist to work out why,” she says. “My work is to encourage curiosity and to equip teams with the skills to be able to understand.”

Whether it’s through working more with locals and anthropologists – or ideally both – there is recognition that cultural insight is essential for preventing aid workers from causing damage when they are trying to do good.

“I think enlisting the anthropologists in this process – people who truly know about how to go into other countries and be culturally sensitive – is very important,” says Watters.

“One anthropologist asked me to imagine the scenario reversed. Imagine that after 9/11 or Katrina these healers come from Mozambique to knock on the doors of family members of the deceased to say ‘we need to help you through this ritual to sever your relationship with the dead’. That would make no sense to us. But we seem to have no problem doing the reverse.”

My battle with depression and the two things it taught me

Tags

Depression, medication, stigma

My battle with depression and the two things it taught me

It’s often said that depression isn’t about feeling sad. It’s part of it, of course, but to compare the life-sapping melancholy of depression to normal sadness is like comparing a paper cut to an amputation. Sadness is a healthy part of every life. Depression progressively eats away your whole being from the inside. It’s with you when you wake up in the morning, telling you there’s nothing or anyone to get up for. It’s with you when the phone rings and you’re too frightened to answer it.

It’s with you when you look into the eyes of those you love, and your eyes prick with tears as you try, and fail, to remember how to love them. It’s with you as you search within for those now eroded things that once made you who you were: your interests, your creativity, your inquisitiveness, your humour, your warmth. And it’s with you as you wake terrified from each nightmare and pace the house, thinking frantically of how you can escape your poisoned life; escape the embrace of the demon that is eating away your mind like a slow drip of acid.

And always, the biggest stigma comes from yourself. You blame yourself for the illness that you can only dimly see.

So why was I depressed? The simple answer is that I don’t know. There was no single factor or trigger that plunged me into it. I’ve turned over many possibilities in my mind. But the best I can conclude is that depression can happen to anyone. I thought I was strong enough to resist it, but I was wrong. That attitude probably explains why I suffered such a serious episode – I resisted seeking help until it was nearly too late.

Let me take you back to 1996. I’d just begun my final year at university and had recently visited my doctor to complain of feeling low. He immediately put me on an antidepressant, and I got down to the business of getting my degree. The pills took a few weeks to work, but the effects were remarkable. Too remarkable. About six weeks in I was leaping from my bed each morning with a vigour and enthusiasm I had never experienced, at least not since early childhood. I started churning out first-class essays and my mind began to make connections with an ease that it had never done before.

The only problem was that the drug did much more. It broke down any fragile sense I had of social appropriateness. I’d frequently say ridiculous and painful things to people I had no right to say them to. So, after a few months, I decided to stop the pills. I ended them abruptly, not realising how foolish that was – and spent a week or two experiencing brain zaps and vertigo. But it was worth it. I still felt good, my mind was still productive, and I regained my sense of social niceties and appropriate behaviour.

I had hoped that was my last brush with mental health problems, but it was not to be.

On reflection, I realise I have spent over a decade dipping in and out of minor bouts of depression – each one slightly worse than the last.

Last spring I was in the grip of depression again. I couldn’t work effectively. I couldn’t earn the income I needed. I began retreating to the safety of my bed – using sleep to escape myself and my exhausted and joyless existence.

So I returned to the doctor and told her about it. It was warm, and I was wearing a cardigan. “I think we should test your thyroid,” she said. “But an antidepressant might help in the meantime.” And here I realised, for all my distaste for the stigmatisation of mental illness, that I stigmatised it in myself. I found myself hoping my thyroid was bust. Tell someone your thyroid’s not working, and they’ll understand and happily wait for you to recover. Tell them you’re depressed, and they might think you’re weak, or lazy, or making it up. I really wanted it to be my thyroid. But, of course, when the blood test came back, it wasn’t. I was depressed.

So I took the antidepressant. And it worked. To begin with. A month into the course, the poisonous cloud began to lift and I even felt my creativity and urge to write begin to return for the first time in years. Not great literature, but fun to write and enjoyed by my friends on social media. And tellingly, my wife said: “You’re becoming more like the person I first met.”

It was a turning point. The drug had given me objectivity about my illness, made me view it for what it was. This was when I realised I had been going through cycles of depression for years. It was a process of gradual erosion, almost impossible to spot while you were experiencing it. But the effects of the drug didn’t last. By September I was both deeply depressed and increasingly angry, behaving erratically and feeling endlessly paranoid.

My wife threatened to frog march me back to the doctor, so I made an appointment and was given another drug. The effects have been miraculous. Nearly two months in and I can feel the old me re-emerging. My engagement and interest is flooding back. I’m back at work and I’m producing copy my clients really love. Only eight weeks ago, the very idea that I would be sitting at home tapping out a blog post of this length on my phone would have made me grunt derisively. But that is what has happened, and I am truly grateful to all those who love and care for me for pushing me along to this stage.

And now, I need to get back to work. Depression may start for no definable reason, but it leaves a growing trail of problems in its wake. The more ill I got, the less work I could do, the more savings I spent and the larger the piles of unpaid bills became. But now I can start to tackle these things.

If you still attach stigma to people with mental illness, please remember two things. One, it could easily happen to you. And two, no one stigmatises their illness more than the people who suffer from it. Reach out to them.

When intensive care is just too intense

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critical care, delusions, Depression, discomfort, disorientated, distress, drugs, early intervention, fears, flashbacks, hallucinations, intensive care, intrusive memories, nightmares, psychological difficulties, stress, techniques, threat, treatment

When intensive care is just too intense

I still remember the first patient I saw in intensive care. A naked man, covered by a white sheet, was plugged into banks of machines through cables that radiated from his body. His face was covered by a breathing mask, his blood connected to bags of fluids. Muted and voluntarily immobile, so as not to break the fragile web that kept him alive, his eyes tracked me as I entered the cubicle. Intensive care can be a disconcerting place.

As a treatment, it is remarkably successful. Perhaps the greatest tribute to the people who work in critical care is this simple fact: most people leave intensive care alive – despite being dangerously close to death when they arrive. Through a combination of dedication, decision-making and technology, critical care staff ensure that most people pull through. This is the result of years of careful research that has focused clinical practice on restoring the body’s functioning as quickly and efficiently as possible.

But recently there has been a dawning realisation that the impact of intensive care extends beyond the survival of the body. Dorothy Wade is based at University College Hospital in London and is one of the country’s few intensive care psychologists. She led a recent study which found that more than half of patients assessed at follow-up had marked psychological difficulties. “We learned that patients were suffering from serious depression or having frightening flashbacks and nightmares to their time in intensive care,” says Wade. “This badly affected their quality of life and also held back their physical recovery from their illness.”

In another study, recently submitted for publication, Wade interviewed patients about the hallucinations and delusions they experienced while in intensive care. One patient reported seeing puffins jumping out of the curtains firing blood from guns, another began to believe that the nurses were being paid to kill patients and zombify them. The descriptions seem faintly amusing at a distance, but both were terrifying at the time and led to distressing intrusive memories long after the patients had realised their experiences were illusory.

Many patients don’t mention these experiences while in hospital, either through fear of sounding mad, or through an inability to speak – often because of medical breathing aids, or because of fears generated by the delusions themselves. After all, who would you talk to in a zombie factory?

These experiences can be caused by the effect of serious illness on the brain, but painkilling and sedating drugs play a part and are now used only where there is no alternative. Stress also adds to the mix but is often caused inadvertently by the way intensive care wards are organised. “If you think about the sort of things used for torture,” says Hugh Montgomery, a professor of intensive care medicine at UCL, “you will experience most of them in intensive care. As a patient, you are often naked and exposed, you hear alarming noises at random times, your sleep-wake cycle is disrupted by being woken up for medical procedures through the night, you will be given drugs that could disorient you, and you will be regularly exposed to discomfort and feelings of threat.”

This has led to a recent push to reorient treatment toward reducing patient stress, and long-term psychological problems, without sacrificing life-saving efficiency. Take this simple example: a study led by consultant critical care nurse John Welch at UCL found that the pitch or tone of alarms on intensive care equipment has no relation to how urgent the situation is. Many frightening-sounding alarms are just reminders – this bag needs refilling in the next hour; don’t forget to change the filter – and are often left until more important tasks are finished. But, to the uninitiated, it might sound as if death is imminent and no one is responding.

Some stress is simply an unavoidable part of necessary medical procedures. Breathing tubes inserted through the mouth or surgically implanted through the neck are notoriously uncomfortable. And, despite the survival rates, people die in intensive care. A daunting experience if you’re a patient in the same ward.

Helping patients with their intense emotional reactions, whether they arise from hallucination, misunderstanding or medical intervention, normally happens on an ad hoc basis and for many clinicians it is a relatively new situation that hasn’t been incorporated into standard training. In many intensive care units, the approach was to sedate patients for the whole of their admission. As this practice declined, for the first time, clinicians were faced with distressed, possibly hallucinating, awake patients.

Wade is currently working with clinicians to take a more systematic approach to detecting and reducing psychological distress. “There have always been experienced or just naturally empathetic nurses and doctors in intensive care,” she says. “We’re trying to build on that natural care and compassion by teaching nurses and doctors more about the causes and nature of psychological distress… and training them with simple psychological techniques that could help to reduce immediate and long-term distress.”

For his part, Montgomery is less convinced about early intervention. He feels intensive care needs to be reorganised to reduce stress but psychological problems are best dealt with in follow-up clinics.

The best time for treatment is the subject of an ongoing debate, but for the first time studies have been funded that will answer these questions. Intensive care is being rethought and may become, at least psychologically, less intense.

Why should teachers talk about mental health with students and colleagues?

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anxiety, Bullying, career, colleagues, Depression, harassment, management, mental health issues, recovery, secret, stigma, stress, support, teachers

Why should teachers talk about mental health with students and colleagues?

Clare can now talk with calm reflection about the moment she decided to end her life. She remembers feeling as if she were living in a sort of twilight zone where nothing made sense: she was being shunned by colleagues and faced losing her job as a teacher.

Things had spiralled out of control after Clare was signed off work with stress-related depression. When invited back to school to talk about when she might return, managers tried to renegotiate her contract. Clare immediately sought legal advice. “I felt isolated, bullied and harassed.

“My managers were asking other staff members about me and I was becoming increasingly anxious by what was happening. Instead of supporting me and making reasonable adjustments to the fact that I was off with stress, the school’s response was completely punitive.”

Part of the problem is that mental illness in teaching is stigmatised, says Clare. “If you reveal that you are stressed, it is seen as a great weakness – that you are just not up to the job.”

Figures published by the Association of Teachers and Lecturers (ATL) this year showed that more than a third of school and college staff have noticed a rise in mental health issues among colleagues in the past two years. Despite this, 68% kept their problems a secret from their bosses.

In a recent Teacher Support Network survey, the majority of teachers (89%) blamed excessive workloads for their mental health problems, and 40% wouldn’t talk to anyone at work about mental illness because was seen as “a sign of weakness”.

People worry about being seen as not good enough, says Tim, a teacher who retired early due to stress and anxiety. “If you are suffering from work-related stress you are especially reluctant to seek the support of senior management for fear that your complaints could be seen as an indictment of their management.”

David Ambler, ATL district secretary in Birmingham, says mental health problems are also stigmatised because of worries about how this will make a school look. “To reduce the stigmatisation of mental illness requires more than simply a change of attitude among headteachers and senior management in school. It requires a change of attitude among the general public and parents to understand that teaching is a stressful job and sometimes teachers go under or need treatment.”

When Michael was signed off with stress-related depression, he found that some colleagues were understanding but others were not. Teachers worry about the impact of admitting to a mental health problem on their career, he says. The headteacher who employed Michael in his current post said that she was taking a huge risk and put him on a six-month trial period. “Employers are not as sure about mental illness as they would be about physical illness,” he says. “If I broke my leg, for example, and came back to work I don’t think I would be trialled in the same way.”

But this needn’t be the case if the stigma around the issue of mental illness is tackled and the right support is put in place. Rachel, who has experienced depression for years but hasn’t taken time off work, puts her ability to keep teaching without taking any extensive leave down to the support of her senior leadership team and colleagues.

“I am able to talk to all my senior management team and have good friends on the staff who also know and are supportive. My experience of mental health, if anything, has done the opposite of holding me back. But if I had not received the understanding and support I did then I would almost certainly have ended up off sick and probably left teaching.”

Nor is this just an issue of doing the right thing and supporting people experiencing mental health problems – it’s also essential to their recovery. Alison Stark, a senior teacher at a Dutch secondary school, who is off sick with work-related burnout, says there is a more open culture to mental health in the Netherlands.

“The first step is admitting that you have a problem. I talked about my problems with a friend and just being able to say out loud that I am struggling helped me accept things,” she says.

Her school has been patient and supportive – rather than worrying about what to say, colleagues have sent her cards, flowers and message of support. “It is important that schools have a supportive management who are understanding. Headteachers need to support management and create an atmosphere in which teachers can talk about it [mental illness].”

For Stark, the most supportive person has been her deputy head, who has sought solutions by asking her what she needs and what would aid her recovery. “They say, ‘do you want me to allow you home access to email or not? Should I block it and protect you?’”

An openness about mental illness could also help students by ensuring they have positive role models. Kelly, who just started in a girls’ school, is recovering from an eating disorder and used to self-harm. She says stress from teaching can cause a flare-up in food-control behaviours and she has visible scars on her arm. “I am what you could call a normal weight so it’s not obvious I struggled with bulimia, anorexia and excessive exercising,” she says.

Kelly wants to share her experiences to show her pupils that no one should let mental health problems define them, but she worries about the repercussions. “I worry that my school would not be supportive of my talking about my experiences as they would be concerned about the potential backlash from parents. If students mis-reported the story at home some parents may be concerned about my capacity to cope.”

• Most of the names in this article have been changed to protect the teachers who shared their stories.

The Tackling mental health stigma in schools series is funded by Time to Change. All content is editorially independent except for pieces labelled advertisement feature. Find out more here.

Depression doesn’t make you sad all the time

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Depression, happy, myths, sad, stigma

Depression doesn’t make you sad all the time

One of the most popular, enduring, and irritating myths about depression is that it means depressed people are sad all the time – and that by extension, people who are happy can’t be experiencing depression, even if they say they are. It is a skewed and horrible version of depression, and it’s one that further stigmatises the condition and isolates people with depression and related mental health conditions. This is because, put bluntly, depression doesn’t make you sad all the time – though the level of sadness a patient experiences can of course vary depending on the individual and the severity of depression.

When I’m having a depressive episode, I’m not walking around in tattered black clothes, weeping and wailing. I go out with friends. I crack jokes (especially sardonic ones). I keep working, and have friendly chats with the people I work with. I often manage to feed and clothe myself, I read books. Above all, I experience moments of happiness: a flash of delight as I’m walking on the beach with a friend and the sun is perfect and the breeze is just right; a surge somewhere deep inside when I’m surrounded by beautiful trees and it’s raining and I feel my heart swelling to encompass the whole world; a warm, friendly, affectionate sensation at the touch of a friend, a hug at the end of an evening or a hand placed over mine as we lean forward to see something better.

Yet I feel a strange conflicting pressure. On the one hand, I feel like I need to engage in a sort of relentless performative sadness to be taken seriously, for people to understand that I really am depressed and that each day – each moment of each day – is a struggle for me, that even when I am happy, I am still fighting the monster. I feel like I need to darken everything around me, to stop communicating with the world, to stop publishing anything, to just stop. Because that way I will appear suitably, certifiably sad, and thus, depressed – and then maybe people will recognise that I’m depressed and perhaps they’ll even offer support and assistance. The jokes die in my throat, the smile never reaches my lips, I don’t share that moment of happiness on the beach by turning to my friend and expressing joy.

I don’t, in other words, do the things that can help ameliorate depression, encourage people to reach out, and help depressed people with functioning, completing daily tasks of life, and finding a reason to live again. I don’t find and build a rich community of people who can offer support (and whom I can support in turn), because I have to be so wrapped up in performing my sadness at all times to prove that I’m depressed enough – even as I want to scream that this is a reinforcement of stereotypes that hurt people, that by doing this I am hurting not just myself but others.

On the other, I feel an extreme pressure to perform just the opposite, because sad depressed people are boring and no fun, as I am continually reminded every time I speak openly about depression or express feelings of sadness and frustration. I’m caught in a trap where if I don’t perform sadness, I’m not really depressed, but if I express sadness at all to any degree, I’m annoying and boring and should stop being so self-centred. Thus I’m effectively pushed into fronting, putting a face on it even when I am depressed and deeply sad – when I feel like I am choking on my own misery, I put up a cheeky Tweet. When I hate myself and I want to die, I post a link to something fun, or I write up something silly to run somewhere – even though as I write it, I am drawn deeper and deeper into my unhappiness.

Depression is an asshole, and it can become your master, but you can slip out from under it occasionally. And many depressed people in the midst of an episode don’t actually spend it fainting dramatically on the couch and talking about how miserable they are. Some are high-functioning (bolstered by the need to put a face on it), others are into morbid jokes, others try to reach out for help (isn’t that what we’re “supposed” to do?) from friends and try to make their depression less scary. Depression isn’t an all-or-nothing deal – seeing a person who identifies with depression cracking a joke or having fun or dancing with a friend isn’t evidence that the person is faking it, whether the person is experiencing a moment of genuine happiness, or fronting. Conversely, jollying up people with depression to demand that they start being more fun is equally revolting, a refusal to acknowledge that people experiencing a rough day, or a rough week, or a rough few hours aren’t going to be your trained monkeys.

Depression manifests differently in everyone and at different times. Various behaviours are not proof positive that someone is or isn’t depressed, and, as with any armchair diagnosis, insisting that someone is not actually depressed just because of a show of something other than deep, entrenched sadness is actively harmful.

Look at the woman above, joyously cycling on a beach, hair fluttering in the breeze. You can’t judge her emotional state or her larger mental health picture, nor should you.

• This article was originally published on This Ain’t Livin’, part of theGuardian Comment Network