How Sridevi shot for 'Devaraagam' in between her mother's botched up brain surgery

Despite the mental agony she must have been going through, Sridevi kept flying back to Kerala at regular intervals to shoot for 'Devaraagam'.

Director Bharathan, who had shot child Sridevi in her first-ever ad campaign for Chandrika soap, approached her to play Lakshmi in his biting social commentary Devaraagam (1996). More than the actress, it was Rajeshwari who was elated. She still remembered Bharathan from that calendar shoot and instantly persuaded Sridevi to accept the project.

With the actress’s professional front silent, her personal life was about to create headlines now. In early May 1995, Sridevi’s mother suffered a seizure and diagnosis confirmed a brain tumour. Following the advice of doctors in Madras, the actress took Rajeshwari to the reputed Memorial Sloan Kettering Cancer Center in New York for surgery. During this time, Boney Kapoor reached out to her once more. Boney shares: ‘My relationship with Sri normalized again. I helped her with all the arrangements in New York and also took time off to be with her family. I got closer to all of them. Many years later, Sri told me something that touched me deeply. She said that while flying to New York, her mother had told her in the plane that if she ever did another film with me, she should not charge any money. I think Sri also started seeing now that my feelings for her were sincere.’

Despite the mental agony she must have been going through, Sridevi kept flying back to Kerala at regular intervals to shoot for Devaraagam. Returning from her father’s last rites four years ago, she had performed a comedy scene for Lamhe. Now in between attending to her ailing mother in New York, she was shooting for Devaraagam in India. The actress was not only displaying professional ethic but also personal grit. Veteran actress and Bharathan’s wife, K.P.A.C. Lalitha, wonders where from was Sridevi drawing such impossible strength: ‘No one else could have done this when your mother is lying in a critical condition in a different country. I think it was Sri’s big heart that made this possible, her kindness and compassion for others. Her belief in the sanctity of her work. Her mother had promised us and she was honouring it no matter what.’

That teenage girl who had squabbled with K. Bhagyaraj on the sets of 16 Vayathinile, because she hardly understood the importance of continuity in a film, had now become a meticulous woman. K.P.A.C. Lalitha reveals: ‘Since the schedules of Devaraagam were erratic due to Rajeshwari amma’s illness, Sridevi maintained a diary. She would note down all her costume details before leaving so that when she would be back for the next schedule, there would be no continuity issues. Keeping track of such minute details in the middle of a personal crisis is exemplary. I have never seen anyone so dedicated and I don’t think I ever will.’

Bharathiraja, who met Sridevi during this time, found her putting up in a small apartment in New York. He advised her to rent a larger one but the actress wanted to keep things simple. She was cooking herself and taking care of her mother. In public, she had her brave face on. In private, she was anxious that the surgery goes well. 

Alas, that was not to be. The day Rajeshwari was being wheeled inside the operation theatre, she suddenly clutched her daughter’s hand, her nails digging into Sridevi’s skin. A spasm of terror passed through her face. Glancing at the actress and their family doctor who had accompanied them, Rajeshwari uttered these strange words, ‘Please tell them to operate me in the right place.’ Their family doctor laughed and assured her saying, ‘Of course they will. It is like telling your daughter to act well.’ Hours later, Rajeshwari’s fear had come true. In a bizarre case of medical negligence, the neurosurgeon, Dr Ehud Arbit, had operated on the right lobe of her brain while the tumour was in the left lobe. The botched-up surgery soon sparked headlines across America. While Arbit faced suspension, President Bill Clinton made it mandatory for US hospitals to disclose their medical malpractices. But in the middle of all this chaos stood a horrified daughter trying to make sense of what had just happened to her mother, wondering if she was to blame for bringing Rajeshwari here, clinging to her own sanity as the press hounded and lawyers bickered.

And yet, Sridevi turned up on time for the final schedule of Devaraagam in India. The actress was in absolute control while performing the last remaining scenes—the composure on her face hardly betraying the storm inside her. But when Bharathan gently inquired about Rajeshwari’s condition, Sridevi broke down. K.P.A.C.Lalitha recalls how the actress’s pent-up emotions spilled over: ‘She was in tears as she told us that the wrong surgery had affected the memory part of her mother’s brain. She said Rajeshwari amma was talking about things that had happened ten years back. But even in that state, Sridevi kept apologizing to my husband that because of her personal problems, Devaraagam had to be scheduled in an irregular manner.’

It was only after the tumour was removed at Cornell Medical Center that Sridevi returned to India after two harrowing months. While the actress was relieved now that Rajeshwari was recuperating, she was herself battling an enormous sense of guilt. She told Movie: ‘I cannot live without my mother. I need her for everything. If I have a problem, I still call her up and ask her what to do. We are virtually bound by an umbilical cord. How can a qualified doctor do something as drastic as this? It’s unpardonable. Today, when I look at her, I feel so guilty. There are so many good doctors even in Madras whom I could have taken her to. In the US, I felt so frightened, lonely and lost.’

Excerpted with permission from Sridevi The Eternal Screen Goddess by Satyarth Nayak, published by Penguin Randomhouse. 

(Source: TNM)

Teen one of first UK proton-beam patients

Fifteen-year-old Mason Kettley, who has a rare brain cancer, is about to become one of the first UK patients to have proton-beam therapy, at a new dedicated treatment centre.

He is starting treatment at the £125m centre at Manchester's Christie hospital.

Previously, most patients needing the treatment had to travel abroad.

The specialist radiotherapy targets cancers without damaging tissues around the tumours.

This is good for children who are at risk of lasting damage to organs that are still growing but it is available in only a handful of countries around the world.

Mason is studying for his GCSEs

Mason, from Angmering, West Sussex, was diagnosed with a brain tumour in October.

"I had some headaches and stomach pains and usual things, and got check-ups at the doctors," he said. "My mum said, 'He's not gaining weight or growing.'"

An MRI scan showed he had a rare pilomyxoid astrocytoma brain tumour. It couldn't be operated on because of a risk of blindness and other "catastrophic" complications.

"The machine is intimidating because of its size," he said.

"It's a bit nerve-wracking but this is a better choice than chemo because it's more effective.

"Because of my age, [doctors] thought radiation would be a better choice."

Oncologist Gillian Whitfield is leading Mason's care. She said his was a low grade (slow growing) tumour with a "high chance of cure".

"For Mason, in comparison to conventional radiotherapy, PBT should carry a lower risk of some important long-term side-effects of treatment - particularly effects on short-term memory and learning ability - and the risk over the next eight decades of the radiation causing other tumours.

"This is particularly important for children and teenagers with curable tumours, who will survive decades after treatment and are at much greater risk of serious long-term effects of treatment than adults."

Mason, who lives with his mother, step-father, and four siblings, and is in the middle of preparing for his GCSEs, will have 28 treatment sessions taking place Monday to Friday for almost six weeks.

He has had a specially made radiotherapy mask created to keep his head perfectly still during the therapy. And while he may get short-term side effects such as vomiting and headaches, long-term side-effects are rare.

And he said his experiences as a patient had influenced his future career plans.

"I'm so grateful to all the doctors involved in my care and I'd love to do what they do one day - it will be my way of giving something back."

Radiographers David Kirk and Melissa Bentley with a test dummy as they demonstrates the
new proton-beam therapy centre at the Christie hospital, in Manchester

What is proton-beam therapy ?
Patients have been able to travel overseas for NHS funded treatment since 2008. But some haven't been able to travel because they are too ill or their treatment need was too urgent.

The travel also caused major upheaval to families at a very stressful time.

The Christie hospital centre opened in autumn 2018. The first patient to have PBT there, who is still undergoing treatment, did not want publicity.

A second PBT centre is also set to open in the UK, at London's University College Hospital, offering the therapy from 2020.

It is hoped that each will each treat up to 750 patients every year.

The Clatterbridge Cancer Centre in Merseyside has been delivering low-energy proton therapy specifically for NHS patients with eye tumours.

But the two new centres are the first to deliver higher doses to a broader range of cancers - including brain, head and neck cancers and sarcoma, a rare cancer of soft tissue.

Both will carry out research to assess PBT's suitability for treating other cancers.

Proton-beam therapy made headlines around the world in 2014, when the parents of five-year-old Ashya King were arrested after taking him abroad for the treatment in Prague.

(Source: BBC)

'Before, I was quite a shy person': Life after brain damage

Suffering a traumatic head injury is a terrifying ordeal, with serious implications for the way we live. Yet, strangely, there can be an upside. Here, four people talk about their experiences

Alpha Kabeja was cycling back from a job interview with MI6 on New Year’s Day 2012 when he was hit by a van and taken to hospital by ambulance. Actually, that’s not exactly right. He was taken to hospital in his private plane (the pilot parked it in one of the hospital quads). Wait, that’s not it either.

What actually happened on that cold, sunny day was that Kabeja came back from an all-night party, slung a bag of clothes over his shoulder, and cycled off to see his girlfriend. He was in a hurry, so when he realised he’d forgotten his helmet he thought, no bother. Moments from his home, he was hit by a van. The driver fled the scene, and Kabeja suffered a brain injury. The interview and the private plane? All fabricated memories produced by his brain as a way of making sense of his traumatic injury.

Our brains are miraculous and mysterious things. Everything we are and do, everything we feel and believe, is the product of electrical signals in our neural pathways. When something catastrophic happens to our brains, such as a car accident or a stroke, our personalities become rearranged, as though a burglar has rifled through our drawers. To the outsider, it may not appear anything has been stolen. But the owner of the house knows an intruder has been.

 One patient brought her family to the appointment. 'Doctor,' her relatives told him, 'she’s much nicer now than before'
In the 18th century, Franz Joseph Gall suggested that our mental functions arose from the brain. Before then, physicians believed our intellectual capacities sprang from an abstract, metaphysical soul – or, failing that, from the heart, liver, or even the spleen. Gall was banned from Austria: the idea that our eternal souls sprang from a lump of flesh was deemed un-Christian, and a threat to public morality.

Firoza Chowdhury: ‘I’m more sensitive to things now’.
Photograph: Alex Lake for the Observer

We know more about the brain today. We know that frontal lobe injuries make you short-tempered and irritable, and can lead to impulsive behaviour, such as gambling. We know that damage to the parietal lobe causes aphasia, or problems with language.

But there is still much we don’t know, or don’t want to know: although we no longer ban discussions of the brain’s functions as a threat to public morality, an old-fashioned squeamishness prevails when we’re confronted with the reality of a life-changing, but invisible, injury.

“There’s absolutely no understanding in general society, as well as in the medical profession, of brain injuries, because it’s a hidden disability,” says neurologist Dr Richard Sylvester. Since those with brain injuries often can’t advocate for themselves – or don’t realise why they need to, believing themselves to be perfectly well – the disability tends to be overlooked.

People with brain injuries can fall through the cracks of a system not set up to deal with their complex needs. Neurosurgeons operate to save their lives, but patients get discharged into the care of GPs who may not notice subtle problems in intellectual function or changes in personality. “People get lost,” says Sylvester.

Few specialist services exist. Headway East London is one charity that supports brain-injury survivors. The sound of tin drums floats through an open window from a music therapy group; in an adjacent art studio under a railway arch, a quiet young woman draws a witch in chalk. It’s a light-filled, cheerful space that’s been decorated by members (as service users are called) with brightly painted murals. Staff are on first-name terms with the survivors: there’s Carol, who’ll read your horoscope, or 80-year-old Dolores, who graffitied the back of the building. But many who sustain brain injuries will never get a chance to join a supportive community: Headway is vastly oversubscribed.

In his years as a neurologist, Sylvester has had time to contemplate what it means to be human. “Our identity isn’t fixed,” he concludes. “It’s a narrative that we depend on, which incorporates all sorts of things: our memories, which aren’t true anyway, but self-selected; our relationships with other people; our belief systems; what we do.” Every moment of every day, without even knowing it, we tap into our brain’s seams of personality, intellect and emotion. If a catastrophe befalls this rich and productive mine, the load can be transformed. “Your brain controls your emotions and all those other things that are wrapped up in your sense of self; who you are, your behaviour, thoughts and beliefs,” Sylvester says. “It’s a perfect storm.”

Understanding how trauma shapes and rewires our brains enables us to excavate at the coal face of human identity. Most of the time, it’s not a heart-warming story. “People lose stuff,” Sylvester says frankly. “And it’s pretty fundamental stuff, and they often don’t even realise it, which is one of the biggest tragedies.”

But sometimes, it’s not all bad. Survivors may become more creative or empathetic. Sylvester recalls a high-flying academic whose injury made him realise that he never really listened to other people. Another patient brought her family to the appointment. “Doctor,” her relatives told him, “she’s much nicer now than before.”

The eminent neurologist Oliver Sacks recounted one such story in his book, The Mind’s Eye. Patricia, a gregarious gallerist, lost her powers of speech, reading and writing after a brain haemorrhage. With a superb effort of will, she became an artful mime. “It’s as if the negativity has been wiped away,” her daughter Lari told Sacks. “She is much more consistent, appreciative of her life and gifts, and of other people too… She is the opposite of a victim. She actually feels that she has been blessed.”

Alpha Kabeja: ‘My brain fabricated memories to fill the gap’

 ‘When my friends came to visit, I told them about my Gulfstream G650.
I told them it was parked in one of the hospital quads.’
Photograph: Alex Lake for the Observer

After being knocked off his bicycle on 1 January 2012, Alpha Kabeja, 35, sustained a traumatic brain injury. As a result of the injury and a subdural haemorrhage, he experienced post-traumatic amnesia, sometimes known as confabulation or false memories.

The last thing I remember was the van coming towards me. Then I woke up from my coma. Because I had been in the coma for so long, my brain had fabricated memories from my subconscious to explain the gap in my recollections.

I was convinced the accident happened on the way back from a job interview at MI6. The memory was staggeringly detailed: I’d been interviewed for the position of operations assistant by the director of operations, Michael Mitchells. It went well! The job was mine.

No one challenged me. When my friends came to visit, I told them about my plane: a Gulfstream G650 that I’d been brought to the hospital in. They said: “Where’s the plane now?” I told them that it was parked in one of the hospital quads, so we went down together to see it. When it wasn’t there, I said: “I know, the pilot’s moved it.” Internally, I was thinking, “I hope the pilot hasn’t done a runner with it. That plane cost a lot of money!”

 I’m more positive now. I can’t seem to stop myself smiling
When I was in hospital, I kept worrying about my new job, so I called MI6. The receptionist asked me when I’d had my interview, and I told her: “1 January”. She said, “The building was closed that day.” I hung up and sat on the bed for a long time, analysing what the hell had just happened. I had this sinking feeling in my stomach. When I saw the psychologist, she explained that I had post-traumatic amnesia. I accepted that the memories weren’t real straight away. It was so much easier to let it all go.

In hospital, there are times you’re trying to sleep, but the nurses are being loud. I started meditating. Questions would float through my head like: “Why did this happen to me? Why did I get hit by a van on the one day I wasn’t wearing my helmet?” The meditation helped me realise there was nothing I could do to change what had happened, so I had to live with it and move on.

The best way to describe myself now is Alpha 2.0. I have changed. If anything, I’m more positive now. Sometimes I can’t seem to stop myself smiling. It’s almost involuntary. I’m only thankful for what has come from the accident. It’s weird, but I feel more creative now than before. Sometimes I’ll be writing a poem, and just get lost in it. I’m writing a book, and I just qualified for the Paralympics. I’m completely content with my life now. The other day I was meditating, and the question came to me: “If I ever saw the person who knocked me over and left the scene, would I forgive them?” The answer came easily: “Yeah.” That’s when I knew I’d moved on.

Whether a brain injury changes one’s life for the better or the worse is down to chance. The only certainty is that things will be different. A brain injury changes you.

Sam Jevon: ‘I rarely feel angry or sad now’

 ‘The driver of the car never came to see me. She’s a horrible person.’
Photograph: Alex Lake for the Observer

Sam Jevon, 50, was a passenger in a car that came off the road in June 2006. She sustained a traumatic brain injury which resulted in a subdural haematoma and a left temporal contrecoup injury.

At the time of my injury, I was not in a good place. I was drinking too much. The doctor said: “If you keep drinking this much, you’ll end up with a dodgy liver.” I kept drinking anyway. My friends would have described me as mad and very loud. I would fight any man, I didn’t care how big they were. I wasn’t frightened of anyone.

The accident has done me a favour. I have a better life now. I am less stressed. The only thing I miss is being in my darts team. I used to be really good at darts.

 I wasn’t artistic at all. Now I can’t believe how well I can draw
When I was in hospital, I didn’t talk to anyone for a long time. I’d sit in the ward and people would bring me things to play music on, but I wasn’t interested. The driver of the car never came to visit me. She’s a horrible person.

I don’t see things how other people do. It’s difficult for me to perceive other people’s feelings. I often have to repeat myself, because people don’t understand what I’m saying. Sometimes it takes a long time to find the word I want. I don’t mind. It’s just how I am.

What’s got me through all this is being a very positive person. Having a sense of humour helps, too. I wasn’t a positive person before the accident, which is odd. I think the injury blunted my emotions, particularly anger and sadness. I very rarely feel particularly angry or sad now.

Before my injury, I wasn’t artistic at all. I could only draw matchstick people. Now, I can draw pictures with lots of detail. You have to be very patient to do art like that. I think the part of my brain that was affected by the injury allows me to concentrate a lot more. Sometimes I can’t believe how well I can draw. I’d like to do a big exhibition.

I don’t really think much about how my life used to be. There’s no good in looking back. Best to look forward. It’s not about how you used to be. It’s about how you are now.

Firoza Chowdhury: ‘I’m more sensitive to things now’
Firoza Chowdhury, 39, collapsed with a thunderclap headache at home on 2 July 2007, after sustaining a left parietal haemorrhage from a pre-existing congenital condition.

I was brushing my teeth with my head in the basin. When I straightened up there was this crazy pain all over my head. I thought, what the hell is this? It felt like my brain had been stabbed with a knife.

I collapsed on the floor. I couldn’t feel my body. Voices were all muffled, as if I was underwater. Then I was in the ambulance, vomiting. When they looked at my eyes, the pupils were different sizes. That’s how they knew something was seriously wrong.

My stroke was caused by a condition called an arteriovenous malformation. The blood vessels in my brain weren’t formed properly. It’s something someone can live with, and nothing ever happens to them. Whether it happens or not, you just cannot say.

At the time of my injury, I worked in publishing. My job was stressful and deadline-driven. A job like that relies on what doctors call executive functions: the skills you need to concentrate, work and analyse. There’s no way I’d be able to do it now. I suffer a lot from fatigue. I can’t concentrate for long periods of time, or process information. Not being as independent as I would like is also hugely frustrating. If I have a friend over on a Saturday evening and stay up late enjoying myself, I will still be recovering from it on Monday. I call it fatigue flu: you feel really exhausted and low. It’s upsetting, because you’ll have a nice time, but then the aftermath is so crap.

I’d love more than anything to be able to concentrate for a long period of time, or go out and about, and not have to worry about how I’ll feel tomorrow. To feel healthy again would be so wonderful.

Before, I used to be quite a shy person. Now, I’m less filtered. I’m more sensitive to things now; I have more anger as well. I’m more likely to perceive an offhand comment in a negative way. I’m not sure why.

I have a lot of anxiety around public transport. Before my injury, I wouldn’t think twice about being in a crowded tube. But now it’s intimidating, especially when there are people bashing into you.

I’m not good at telling people I’ve had a brain injury. I want to be treated the same as anyone else. I worry about how people are going to perceive me. I don’t want them to think there’s something wrong with me.

It hasn’t all been negative. There has been positives as well. I feel negativity when the fatigue gets to me. But when I don’t feel that way, I remember that, yes, a lot of things have changed and my life is different, but doors have opened at the same time. I am more creative now, and I’m thinking of studying dressmaking. Physically, I am improving. I was able to run after my nephew the other day in our garden – I’d never have been able to do that before.

Since the brain injury, I have learned about life: how hard it is, and how things can change. One minute you’re going about your business, and then everything is different. But I’ve learned how to survive.

Lina Lacides: ‘The only thing I can’t do is read’

 ‘My daughters came looking for me and found me on the bathroom floor’.
Photograph: Alex Lake for the Observer

Lina Lacides, 53, from Guadeloupe, suffered a brain injury as a result of a cerebral bleed on 29 December 2003.

I was in Burger King with my daughters. I went to the toilet and never came back. My daughters came looking for me and found me on the bathroom floor. I was completely, covered in blood. My brain had simply exploded and there was blood everywhere.

After spending a year in hospital, you get really fed up. It’s like prison. I kept asking the doctors when I could go home, and they kept saying: “Not yet.” So finally I ran away. Everyone panicked! In the end they sent a helicopter to look for me. It worked, though. The week after my escape, they let me go home. I think they realised I’d had enough.

 ‘After a year in hospital I ran away. They sent a helicopter to look for me’
Before my accident, I was always busy. I worked all the time. It was too much for my brain. Now, I take it easy. When I realised I couldn’t read any more, I cried. I thought: “I’m nothing in this life if I can’t read.” Everything you need to do, you need to be able to read. But then I thought, some people go blind or can’t speak after a brain injury. The only thing I can’t do now is read. So I try not to be negative.

I still have the mother instinct with my daughters. I know what’s good for them, and what’s not. They can’t say to me, “Mum, I’m going to a party.” I’ll tell them, “No you’re not. Go upstairs and read a book.”

I’m embarrassed to tell people I can’t read. The other day I went to a car showroom, and I asked the assistant to read the prices to me. I told them that I had left my glasses at home. But it’s OK. Imagine being depressed about something like that. There’s no point. Being negative can push you to suicide. I don’t want to kill myself!

After my injury, I thought I wouldn’t be able to cook again, but I knew straight away how to make rice and peas and curry chicken, because it’s my food. If I’m trying something new, I force my brain to remember. I still know how things should taste. I know not to put sugar in a curry, but garlic, or spice.

I apply the same logic to my life as I do with my cooking. You won’t be able to do something at first, but you can learn it by trying. It’s the same with my food. Maybe I put too much salt in it last time, so I’ll use less salt today.

I live my life day by day. When you plan things too much, they don’t work out. And I’m positive. There are always people worse off than you.

(Source: The Guardian)

The hidden ways gender affects healthcare

Women are more likely to wait longer for a health diagnosis and to be told it’s ‘all in their heads’. That can be lethal: diagnostic errors cause 40,000-80,000 deaths in the US alone, writes Maya Dusenbery in her book 'Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick'. Here's an adapted excerpt:  

Compared to many other diseases, diagnosing a brain tumour is fairly straightforward. Promptly detecting it comes down to being concerned enough about the early symptoms – which range from fatigue to seizures to personality change – to get an image of the brain. Either the tumour is there, or it isn’t.

But in 2016, the Brain Tumour Charity released a report on the treatment of brain tumour patients in the United Kingdom. It found that almost one in three of them had visited a doctor more than five times before receiving their diagnosis. Nearly a quarter weren’t diagnosed for more than a year.

Women, as well as low-income patients, experienced longer delays. They were more likely than men to see 10 or more months pass between their first visit to a doctor and diagnosis –and to have made more than five visits to a doctor prior to diagnosis.

One 39-year-old woman quoted in the report recalled: “One of the GPs I saw actually made fun of me, saying ‘what did I think my headaches were, a brain tumour?’ I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously.”

To diagnose a brain tumour, a doctor simply must be concerned enough to
order imaging – but it takes doctors longer to do this for women than men
(Credit: Getty Images)

A growing body of research is exploring how “implicit” bias – unconscious biases that are usually not linked to consciously held prejudiced attitudes – contributes to disparities in medical treatment. “We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” says Linda Blount, president of the Black Women’s Health Imperative. “Their bias absolutely makes its way into the exam room.”

One of the most pervasive implicit biases in the medical system regards gender.

Brain tumours are only one example. A 2015 study revealed a longer lag time from the onset of symptoms to diagnosis in female patients in six out of 11 types of cancer. It isn’t that women wait longer to seek medical attention – the delay occurs after they’ve first visited their GP. A 2013 study concluded that more than twice as many women as men had to make more than three visits to a primary care doctor in the UK before getting referred to a specialist for suspected bladder cancer. So did nearly twice as many with renal cancer.

More than just a frustration for patients, these delays cause unnecessary deaths. Each year, an estimated 40,000 to 80,000 people die due to diagnostic errors in the US alone.

*

In reporting my book Doing Harm, I heard from dozens of women with a range of conditions who, at some point during their search for a diagnosis, were told that their symptoms were due to anxiety, depression, or that all-purpose catch-all: “stress”.

Recorded cases show that in six out of 11 types of cancer, women experienced
a longer lag time from symptom onset to diagnosis (Credit: Getty Images)

Jackie’s experience is typical. She first fell ill at age 16, and for years, she suffered from chronic kidney problems, fevers, fatigue, and terrible menstrual and joint pain. She saw a primary care doctor, a urologist, and a pulmonologist. “Everybody was telling me there was nothing wrong with me,” she says.

With tests revealing nothing amiss, Jackie’s primary care doctor decided that she must be depressed and prescribed antidepressants. They didn’t help at all, but Jackie was “accepting whatever the doctors said”.

The tendency to attribute women’s physical complaints to mental illness has its roots in the history of ‘hysteria’ – that mythical female disorder that, over the centuries, was blamed on a ‘wandering womb’ or sensitive nerves and eventually, post-Freud, came to be seen as a psychological problem. The terms have changed over the last century, but the concept – that the unconscious mind can ‘produce’ physical symptoms – has remained alive and well in medicine.

There is a high risk of misdiagnosis inherent in this concept, whether it’s called hysteria, somatisation, or ‘medically unexplained symptoms’ due to stress.

Back in 1965, British psychiatrist Eliot Slater warned that too often a label of hysteria allowed doctors to believe they’d solved the mystery when, in fact, usually they hadn’t. After following up with 85 patients who’d been diagnosed with ‘hysteria’ at the National Hospital in London throughout the 1950s – including by Slater himself – he discovered that, nine years later, more than 60% had been found to have an organic neurological disease, including brain tumours and epilepsy. A dozen of them had died.

Women have long been considered the typical patients with psychogenic symptoms, so it’s no wonder that they are especially likely to find their symptoms dismissed as “all in their heads”. In a 1986 study, for example, researchers looked at a group of patients with serious organic neurological disorders who’d initially been diagnosed with hysteria. They identified the characteristics that made a patient vulnerable to such a misdiagnosis. One was having a prior diagnosis of a psychiatric disorder. Another was being a woman.

The fact that women have higher rates of mood disorders is, itself, likely one reason that it’s so common for women to get a psychogenic label. In the US, women are about twice as likely to have a diagnosis of depression or an anxiety disorder as men.

Studies suggested that as many as 30-50% of women diagnosed with depression were misdiagnosed

But while women may truly have a higher risk, the difference in prevalence rates may be at least partly a consequence of overdiagnosis in women and underdiagnosis in men. Studies in the 1990s suggested that as many as 30-50% of women diagnosed with depression were misdiagnosed. Furthermore, depression and anxiety are themselves symptoms of other diseases, which often go unrecognised in women. And, of course, the stress of suffering from an undiagnosed – and therefore untreated – disease often takes its mental toll. As one article points out, “Ironically, medical misdiagnoses of physical conditions may induce depressive reactions in female patients.”

Once listed in their chart, a psychological disorder heightens the risk that any other physical symptoms a patient has in the future will be automatically dismissed as psychogenic.

Women are especially likely to find symptoms dismissed as
‘all in their heads’ (Credit: Getty Images)

I heard from one woman, a middle-aged Italian immigrant to the US with a history of depression, whose worsening abdominal pain was dismissed as menstrual pain for three years. It wasn’t taken seriously even when she brought up the fact that she had a family history of colon cancer. And it wasn’t taken seriously even when she began having rectal bleeding. When she finally pushed for a colonoscopy, it revealed stage-three colon cancer.

Just a few months longer and it would have been at stage four and incurable.

*

After a few years, Jackie finally got one correct diagnosis. A friend – a well-off white woman – urged Jackie to go see her doctor in a wealthy suburb. He quickly diagnosed her with endometriosis, and surgery alleviated much of her pelvic pain.

But other problems persisted and eventually worsened. After moving to a new city for graduate school, it took another few years to find another set of doctors who would take her symptoms seriously. “I had a lot of, ‘You’re just hysterical,’ ” she remembers. “One of the more common things, especially in emergency rooms, was ‘You’re just drug seeking.’”

As a woman of colour, Jackie was facing more than gender bias. Implicit biases on the basis of race, class, weight, sexual orientation, and trans status all affect clinical care as well.

There is particularly robust evidence showing that US patients of colour, black patients especially, are undertreated for pain. A 2012 meta-analysis of 20 years of published research found that black patients were 22% less likely than whites to get any pain medication and 29% less likely to be treated with opioids.

One study found that healthcare providers believe that black patients don’t
feel as much pain as whites (Credit: Getty Images)

Experts point to a stereotype – widely held by healthcare providers yet utterly false – that black patients are more likely to abuse prescription painkillers. (In fact, white Americans have the highest rates of prescription drug abuse.) But the disparity extends to children, suggesting it’s not just about the assumption of drug seeking. A 2015 study found that white children with appendicitis were almost three times as likely as black children to receive opioids in the emergency room.

A 2016 study suggested that healthcare providers may underestimate black patients’ pain in part due to a belief that they simply don’t actually feel as much pain. When 200 white medical students and residents were quizzed on a series of claims about biological differences between the races, like “blacks’ skin is thicker than whites,” a full half thought one or more of the false statements were true. And, when they later read case studies of two patients reporting pain, those who had endorsed more false beliefs thought the black patient felt less pain, and undertreated them accordingly.

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The biggest danger of having your symptoms dismissed is that once doctors believe they are ‘all in your head’, they stop searching for another explanation

Not being taken seriously enough to be treated is frustrating enough. But the biggest danger of having your symptoms dismissed is that once doctors have settled on the conclusion that they are ‘all in your head’ – or made up in order to get painkillers – they stop searching for another explanation.

Consider the experience of patients with rare diseases, who go more than seven years, on average, before being correctly diagnosed. Along the way, they visit four primary care doctors and four specialists and receive two to three misdiagnoses.

While some delay in diagnosing an uncommon disease may be inevitable, this staggering seven-year gap is not simply because it takes that long for doctors to crack a challenging case. According to a Eurordis survey of 12,000 rare disease patients in Europe, those who were initially misdiagnosed experienced longer diagnostic journeys. And, while being misdiagnosed with the wrong physical disease doubled the time it took to get to the right diagnosis, getting a psychological misdiagnosis extended it even more – by 2.5 up to 14 times, depending on the disease.

Given women’s vulnerability to a psychogenic misdiagnosis, it is perhaps not surprising that they reported significantly longer delays than men.

For example, it took an average of 12 months for men to get diagnosed with Crohn’s disease, an autoimmune disease of the gastrointestinal tract, compared to 20 months for women. Men were diagnosed with Ehlers-Danlos syndrome, a group of genetic disorders that affect the connective tissue, in four years. For women: 16 years.

It takes an average 12 months for men to receive a diagnosis of Crohn’s
disease; for women, 20 months (Credit: Getty Images)

“Being a woman should have no influence on a physician’s clinical ability to diagnose a disease,” the authors of the report wrote. “It is, therefore, difficult to accept that overall women experience much greater delays in diagnosis than men. The more rapid diagnosis of men illustrates that the capacity to do so exists.”

As for Jackie? Midway through graduate school, she finally caught a break. She had been sick for months with a fever that the doctors, despite soaking her in antibiotics, could not break. “A primary care doctor – a woman of colour – believed me, and she collected all of my medical records and literally took them home with her and started trying to piece them together like it was a puzzle.”

She suspected that Jackie might have lupus. A test confirmed it. Jackie thought her battle to be taken seriously was over. In fact, as a black woman managing a chronic disease that frequently landed her in the ER with excruciating pain, there would many more encounters with dismissive healthcare providers in her future.

But at least, after 10 years of searching, she finally had a diagnosis — and, with it, the assurance that it had never been ‘all in her head’. Something really was wrong with her. And now, it could get better.

(Source: BBC)