It seems so obvious now but thanks to the disease I lacked what’s called “insight” in psychiatric parlance – awareness of how ill I was. I have insight now. I know how serious an illness I had and how lucky I was to eventually get the specialist medical help I needed.
One in five mothers suffers from depression, anxiety or psychosis during pregnancy or the first year after giving birth, according to a report last year by the Independent Mental Health Taskforce for NHS England. Yet in England, fewer than 15 per cent of local clinical commissioning groups provide effective specialist community perinatal services for women with severe or complex conditions. Over 40 per cent provide no service at all. This is despite the fact that in the UK, suicide is the leading cause of maternal deaths in the first 12 months after the end of pregnancy.
Many people who tell their stories of severe mental illness do so from a safe distance of years. My story is only months old, and the bits I remember, I see in full technicolour. It was my first pregnancy and it had gone pretty well, apart from some joint pain in my pelvis and the stress of commuting from St Albans to work as a research fellow at the London School of Hygiene and Tropical Medicine. Some days it seemed as if the act of wearing my “Baby on board” badge rendered my fellow travellers temporarily blind and deaf to my bulging bump and seat request. I was done with commuting and also ready to be done with my NHS-mandated, irritatingly cheese- and wine-depleted diet. The end was in sight but in the first piece of evidence that my baby was destined to be a contrary madam, she was breech – essentially meaning she was the wrong way up in my womb – and therefore a plan was made for me to have an elective Caesarean section. In further verification of her wayward nature, she demanded to enter the world before the elective date. So my 8 lb 7 oz of pink, screamy gorgeousness, also known as Beatrix, was born by emergency Caesarean section in January 2016.
Now, as I reflect on the gap between my expectations of bringing her into the world and the reality of it, I see a dark, vast cavern. I had expected to be the first person to hold her. I’d imagined a celebratory moment as the three of us were together as a family for the first time. In fact, due to the cocktail of drugs I had been given I spent most of my C-section trying to throw up. My husband was therefore the first to hold her, and clutched her in one arm and a sick bowl for me in the other. I also bled quite a lot, losing about a third of my blood volume. When the operation was over I began to shake violently, so I still couldn’t hold her. We returned to the maternity ward, where a nurse tried to get breastfeeding to work for us, but I was still shaking too much. Ever resourceful, she hand-milked me and collected the milk in a syringe to give to Beatrix. And that’s not the least dignified experience I’ve had since joining the ranks of motherhood.
In those first few days I began to develop beliefs that I can now see as the first daggers of disease stabbing my mind. I thought all the nurses were talking about me, and had an ever-growing suspicion that my baby had been swapped. “She looks just like your husband,” the nurses said, and each time they did I was more convinced that she had been swapped and that they were part of a conspiracy trying to fool me. Over time, once back home with my baby, I felt increasingly anxious and had a burgeoning concern that ninja social workers were watching me and plotting to take my baby. I had to prove to the world that I was a model mum so the spying social workers wouldn’t see any signs of weakness. I therefore hid my suspicious thoughts and fears from everyone. Even my husband, who has been my best friend and confidant for over 13 years, wasn’t aware of just how ill I had become. However, he knew from my behaviour that something was wrong and so at his behest six weeks after the birth I went to see a GP. Unhelpfully, she said that it was a “red flag” against my care for Beatrix that I had said I didn’t want a particular health visitor coming round. The phrase set me off and I exited sharply from the meeting, convinced she was part of the baby-thieving conspiracy. Without the help I needed, over the following weeks my mind shattered into a thousand jagged pieces. I became manic.
Five months after my baby was born things had reached the point where I was terrified of leaving the house for fear of murderous social workers. I had a new health visitor, who had picked up that something was amiss and had begun visiting every two weeks. When she came round one day to find me speaking rapidly and unable to stop pacing, she put the wheels in motion to get me help urgently.
And so it came to be that on an otherwise ordinary Sunday afternoon in June, I was admitted voluntarily to the mother and baby psychiatric unit (MBU) at St John’s Hospital, Livingston (we had left London for Edinburgh to be closer to family). I thought it seemed like overkill, but my mum and husband persuaded me it was a good idea. It didn’t seem like such a good idea once I arrived. As we approached the MBU I heard a baby scream and I instantly ran down the bare brick-walled corridor in the opposite direction, convinced the unit existed to collect up bad mothers and swap their babies for robots. My husband and a psychiatric nurse had to physically shepherd me on to the ward, coaxing me with promises that my baby girl and I could leave again soon. That was an optimistic assessment.
My mind was like a fantastical game of pinball, the steel balls of my thoughts zig-zagging at a million miles an hour around my energised grey matter: “Red car. Gryffindor. Harry Potter. Harry Styles. Ooh, hair!” Each thought lit up like Vegas but burned out quickly, serving only as a springboard to the next – an experience that psychiatrists call a “flight of ideas”. It was exhilarating to think so quickly, faster than I had ever thought before, but there were too many thoughts for one mind to think. I tried explaining this, using an octopus-based analogy, to a psychiatric nurse, who said in a kind voice, the sort you might use when speaking to a small child or a golden retriever, that she didn’t follow. I didn’t expect her to follow. She was like a Peugeot 106 to my Formula 1 car, a three-legged donkey to my thoroughbred, the Circle Line to my bullet train – how could she possibly keep up with me? I didn’t need to slow down, I needed to speed up! And speed up I did, racing and pacing and chasing thoughts around the room. I paused only occasionally to line my belongings up in rows, in a vain attempt to create some order in my spiralling world of ever-increasing entropy.
It was a week before I could leave the room, my paranoid mind conjuring up a million ways harm would befall me in the wide-open savannah of the ward. I pictured the nurses’ station as being staffed by red-eyed hyenas and jackals, all waiting to shred me limb from limb. This was to change as the antipsychotic medication helped to heal my beleaguered brain, and over the weeks of my admission I came to see the MBU as a place of safety. It offered baby massage sessions, weaning classes and splash play activities, all of which enabled me to be the mother I wanted to be. As it was a six-bed unit, there was also the opportunity to meet other mothers who were going through the same thing and discuss the impacts of our various treatments as well as the trials and tribulations of motherhood. In short, it was a place that helped me to re-grow the confidence that my disease had decimated, making me feel positive about our ability to thrive together at home.
I will forever be indebted to the dedicated, exceptionally talented professionals at St John’s MBU. The nurses, the doctors, the nursery nurses, the cleaners, the psychologist – they were united in their effort to care for me and they formed a net that caught me when I was falling fast. Some went above and beyond the remit of their jobs and became valued friends. It’s not an exaggeration to say their care saved my life. More than a year on since Beatrix’s birth, I still know I can lift the phone and get help from them.
It makes sense that holistic care that nurtures and supports the mother–baby relationship is beneficial for a mother’s mental health. As the National Institute for Health and Care Excellence advises: “Women who need inpatient care for a mental health problem within 12 months of childbirth should normally be admitted to a specialist mother and baby unit, unless there are specific reasons for not doing so.” Yet MBUs are expensive to staff and there is a dearth of published evidence comparing the recovery of patients in an MBU with those on a general adult psychiatric ward (who will be separated from their babies). This lack of evidence probably does little to encourage the people in charge of the purse strings to fund MBUs. There are currently just 125 MBU beds in the UK, and some regions have none at all. The entire United States had zero MBU beds until 2011, when the University of North Carolina at Chapel Hill opened its Perinatal Mood Disorders Inpatient Unit with five beds.
Hannah Bissett is well placed to compare and contrast the experience of an MBU with that of a general adult psychiatric ward. In September 2009 she gave birth to her first baby, by emergency C-section, and just two weeks later she found herself admitted to an adult psychiatric ward with postpartum psychosis. In a story I can empathise with, Hannah recalls insomnia and a constant need to pace. She also describes a profound confusion that is a common symptom in postpartum psychosis: “I could barely put sentences together,” she recalls. “I couldn’t remember how to dress myself.”
Hannah was sectioned and spent a total of three and a half months in hospitals in the north of England, initially on two general adult psychiatric wards and then in a small MBU. Her memories of the early weeks of her admission are hazy. She acknowledges that the wards kept her safe. But the separation from her baby was “awful”, she tells me. “I had this one photo on the wall by my bed and it was really well thumbed.” In contrast, she speaks of the MBU with a smile in her voice: “It was my little haven to be with my baby and for my husband to come in and spend family time together.”
The value of this family time shouldn’t be underestimated, and its importance is echoed in the story of Sally Wilson. Sally gave birth to her first baby, Ella, by emergency C-section in March 2015. She too developed postpartum psychosis and the very day of Ella’s birth she began to have the same confusion Hannah describes. “I couldn’t understand that I’d had a baby,” she says. Doctors initially looked for a physical cause, conducting a CT head scan and blood tests. They found nothing, and Sally’s condition progressively got worse until she became manic: “I was running around saying to people I need to breastfeed and I haven’t got time to eat my lunch.”
Things escalated over the next few days until Sally collapsed and had a psychotic episode: “I kind of had what I’d describe as an out-of-body experience, where I could see the midwives and Jamie [her husband] and people around me. But Jamie wasn’t there at the time. I had this realisation that I’d killed Ella and I was dead myself and living in an afterlife. I saw the midwives taking Ella off to be resuscitated – even though this never happened in real life. From that point onwards, reality had changed…” Sally spent a week in a general adult psychiatric ward, until, she says, she lied about how ill she was to get discharged home. She had a home treatment team who visited her house every day for a month, then weekly, then monthly until a year after Ella was born. I ask how she thinks things might have been different if she’d been given a place in an MBU instead and she says: “In mother and baby units you have people who help you care for your baby and bond with your baby. It took me a very long time to bond with her – it’s probably taken the best part of two years to get over it and bond with her. I think all that could have been helped quite a lot, really.”
Both Hannah and Sally tell me their partners were essential to their recovery. I can only concur. My husband was my advocate, my voice when I was too manic to make sense; he did the research I couldn’t sit down long enough to do, and his 6′ 3″ bear hugs formed one of my few places of safety. I would squeeze him hard, making the muscles in my arms ache, as if holding on tight enough could stop my manic need to pace and cease my swirling maelstrom of thoughts.
Like most women with postpartum psychosis, I was offered medication to treat it. There are several options, and it can be a bit of trial and error to find the right drug. This may include antipsychotic drugs, anti-anxiety medications, mood stabilisers and antidepressants. In my case an antipsychotic called olanzapine was key to my recovery, and luckily it was the first I tried. Sally went through six and found none that really tackled her disease, leaving her with psychotic symptoms eight months after Ella’s birth. Her husband, being an academic, scoured the literature to find an evidence-based alternative. What he found was a game-changer for Sally: electroconvulsive therapy (ECT).
ECT was first developed in 1938, and involves passing an electric current through the brain to induce a seizure. When ECT was first used, the seizure would cause painful muscle spasms that could even break the patient’s bones. Today, a general anaesthetic and a muscle relaxant are given, which means the most of the seizure that’s likely to show is a slight twitch of the foot or tensing of the jaw. Doctors can “see” the seizure by monitoring the electrical activity in the brain. A course of ECT usually involves multiple treatments. Its use is controversial, and typically reserved for the most severely unwell or for those patients who haven’t improved on medication.
When her husband first told her of ECT, Sally was surprised because she didn’t think it still existed as a treatment. But, after researching her condition, she enlisted the help of Ian Jones, a specialist perinatal psychiatrist from Cardiff, to persuade her medical team to try the treatment. She tells me it was a success: “It is not a nice thing to have to go through, but it basically saved my life.”
Hannah also had ECT and was also sceptical at first. “To Joe Public it’s an absolutely barbaric thing to do,” she says. “If you’d asked me about it ten years ago, I’d have thought of One Flew Over the Cuckoo’s Nest.” The reality is different. Having been a medical student, I have seen ECT administered and can confirm that present-day ECT would make a truly boring scene in a film. It’s a quick, clinical procedure that can provide rapid relief of life-threatening symptoms. However, as yet we don’t know how it works. Its use began because doctors had noticed that some people with depression or schizophrenia who also had epilepsy found the symptoms of their mental illness improved after a fit. It’s thought that it is the induced fit, as opposed to the administered electricity, that has the therapeutic effect.
However it works, it certainly seems to make a big difference to some patients. Like Sally, Hannah tells me ECT saved her life. Alas, like most treatments it comes with potential side-effects. In the hours following treatment, people can often complain of headache and muscle aches, with a smaller number left tearful or frightened. In the longer term, memory can be a significant issue and this is the source of a lot of the controversy surrounding ECT. The Royal College of Psychiatrists sums up the available evidence: “Surveys conducted by doctors and clinical staff usually find a low level of severe side-effects, maybe around 1 in 10. Patient-led surveys have found much more, maybe in half of those having ECT. Some surveys conducted by those strongly against ECT say there are severe side-effects in everyone.” Both Sally and Hannah have memory loss from the period of treatment, which could be attributed to ECT (although it’s hard to separate this from the potential memory impact of the illness itself). Neither appears particularly distressed by this fact, as Hannah explains very matter-of-factly: “It’s a small window of time, I can live with it really. I have to – I can’t change it.” Other people who have had ECT feel very differently, saying the treatment has had a permanent, negative effect on their memory. Some go further and say ECT changed their personality or caused them to lose skills, but this remains an area of controversy.
As my time on the MBU progressed and I became well, my fearful thoughts were replaced with a lot of questions, such as: what had happened to my brain? I had never suffered from mental illness before and I was used to trusting my mind implicitly. It had earned me a double first at the University of Cambridge, a medical degree and a Master’s from Harvard. What had happened to make it betray me at what was supposed to be a beautiful time in my life? Working in academia, I’m a fully paid up member of the “knowledge is power” club. When faced with adversity I am used to using knowledge like a scalpel to dissect fear and confusion away so I can see the thing responsible for my situation and tackle it head on.
To find answers, I turned to Jessica Heron, a senior research fellow in perinatal psychiatry at the University of Birmingham and director of Action on Postpartum Psychosis (APP), a charity that provides support and information for those affected. She sympathetically listened to my story and patiently responded to a litany of questions with the best available evidence in the field.
I asked her what we know about the risk factors for postpartum psychosis and the first three words of her reply sum up our understanding of the disease generally: “Very little, really.” But she went on to say: “The best guess at the moment is that biological and hormonal factors are involved. There’s been some studies into the most likely candidates and they haven’t found anything consistent. We do know it runs in families more often than you’d expect. We know there’s a strong link with bipolar disorder. So some of the risk factors that have been found in bipolar, like sleep disruption, [may be implicated].” While the risk of postpartum psychosis in the general population is about 0.1 per cent, for women with bipolar disorder the risk is far higher, at around 25 per cent. This suggests there may be a significant overlap in the biochemistry of what’s happening in the two conditions. Unfortunately, when it comes to the neurobiology of both bipolar and postpartum psychosis, there are many theories at large – genes that have been implicated and chemicals that have been incriminated – but no clear answers.
I asked Heron why so little of the biology of postpartum psychosis has been elucidated. “Because it’s been perceived as rare, I think funders haven’t seen it as a priority,” she replied. As she points out, it is not a common complication of childbirth, but it’s comparable with the risk of a 30-year-old woman having a baby with Down’s syndrome, something that is researched extensively and which women are very much aware of. Given that suicide is a major cause of maternal death, it seems shocking that postpartum psychosis has such a struggle to attract funding. APP is the leading source of information for women with the condition and it too battles to be financially secure: having previously been funded by the National Lottery, it currently relies upon funding from Comic Relief to keep its peer-support network running. The loss of this group would not only affect women with postpartum psychosis; it would also leave the research community impoverished. Its network includes 1,000 women, Heron said, “who can help in developing research proposals and giving feedback and saying what they think is most important to study. We’ve also got a very ready population of women who really want to take part in research, but lack the capacity to make the most of this.”
APP receives a growing number of requests from researchers for information, reflecting an increasing interest in postpartum psychosis. Hopefully the funding tides will shift too and there will be fewer question marks floating around the field.
The knowledge drought around my illness left me feeling that science, my usually faithful mistress, had failed me. Thankfully a new friend came to my rescue and provided some of the insight and understanding I sought. My new friend hailed from the humanities and is best described as the art of storytelling. As I plundered the internet for scientific facts I came across many personal accounts of postpartum psychosis. The stories of other women let me see the beast from many different angles, as each woman held up a mirror to her own experience. With each reflection I saw a different part of the beast and in time this helped me build up a better picture of what postpartum psychosis was and what the path to recovery looked like.
I also found recording my own story therapeutic. This started in the hospital, initially through the medium of photos because I couldn’t focus or stay still long enough to write anything. The photos I took tell a tale of mercurial emotions. I charted my depths of sadness through tear-stained selfies and the gut-wrenchingly empty cot when my baby was in the nursery. She was gone to allow me to banish sleep deprivation, but I felt like I’d been hollowed out when she wasn’t there. Matching the depths of sadness were the heights of an electric current of raw anger. This was revealed in images of bruises splashed across my legs from when my sentences were punctuated by self-directed fury. Successes are also trapped in time, such as the first time I roamed the hospital grounds – holding firmly onto my husband, but out in the real world once more. The photos are hard to look at now, but they also help me pin down my personal narrative. When I try to recall the early weeks of being ill, I find my memory is riddled with crevasses. However, looking at the photos allows me to fill in some of the gaps and own that time. Vitally, they also give me an understanding that doesn’t depend on other people’s accounts of what happened to me. This ability to tell my own story goes some way to giving me power over postpartum psychosis, stopping it from stealing my memories of my baby’s early months; however awful some of them may be, they are mine.
Despite the rich medium of imagery, I was pleased when I could once again communicate using the written word. I used Venn diagrams to try and explain my qualms about breastfeeding while taking antipsychotic drugs. I scribbled like a mad hatter about the challenges and injustices of the day. In the early weeks it was like I’d fallen off a motorbike at great speed and my mind was all raw and pitted with debris from the road. But, like taking photos, writing was therapeutic and formed a key part of the healing process. Hannah also cited writing as something that helped, in her case in the form of a diary that let her flick back over the months and years and see how she had improved.
Hannah and I are not alone in finding help in storytelling. In 2006 there was a review of 146 randomised controlled trials of written or spoken “experimental disclosure” (disclosing information, thoughts and feelings about personal and meaningful topics). It found significant positive effects across a range of measures including psychological health and physiological functioning. But by what mechanism might storytelling translate into these physical and psychological benefits? The following year, Matthew Kreuter and colleagues came up with a hypothesis for how narrative communication (which includes storytelling, entertainment, education, journalism, literature and testimonials) might benefit people in the case of cancer, but which I think is transferable to mental illness too.
They suggest that narrative writing allows you to impose order on the chaos that disease foists on your life. This gets to the heart of why, for me, storytelling has been integral to recovering from postpartum psychosis. My diseased brain was the grand high queen of chaos. She had been making up scary stories and convincing me they were facts – like that the depot at the end of my street was an outpost for ninja social workers who would break into the house, steal my baby and murder me. I felt like I was standing in a hurricane of these terrifying thoughts, and writing was like stepping into the quiet eye of the storm where I could physically pin my thoughts onto the page and stop them constantly whizzing around my brain. For someone used to being in control, this was a godsend.
The researchers also propose that the process of writing a narrative gives you a distance and perspective that reframes the illness as a set of solvable problems or an opportunity for positive change. I made a list of things I needed to be able to do in order to be well and get home, such as being able to use the communal kitchen, and venturing off the ward for the first time. One item on the list was about ending my 24/7 observation by a member of staff, something I put down in shorthand as “Lose the shadow”, which led a member of staff to carefully enquire in a concerned tone about who exactly “The Shadow” was.
I also wanted to find a positive from the experience – something I tried explaining to my psychiatrist while I was still manic, telling him that I would make jugfuls of glorious lemonade from the godforsaken lemons that had been piled high on my plate. I slightly undermined the seriousness of my point by jumping to the fact Lemonade was Beyoncé’s latest album. Yet even that little fact became a key part of my story and recovery, as Beyoncé became a source of bonding with a nurse who turned out to be a fellow devotee. I found that stories became a form of currency – when staff handed me excerpts of their life stories, I could see them more as real people and could trust them with more of my story.
With the combined therapies of medication, the MBU and storytelling, I became well enough to go home after six weeks. Unfortunately the road to recovery from postpartum psychosis is often beset with challenges. About three months after being discharged I developed postpartum depression, an experience Heron reassured me is more common than not after postpartum psychosis, and I was hospitalised in the MBU for a further three months. I got home, only to be admitted to hospital for a third time, though only briefly. Once home again I felt I should be back to “normal” me. Nope. It wasn’t until I spoke to Hannah that I realised recovery really begins when you walk out of the hospital doors. One thing she said, which resonated with me, was: “I describe it as being shattered into a million pieces and then rebuilding it all gradually, the main thing being the confidence in my own abilities.” I’ve always been a confident person but the experiences of the last year have dented that.
Writing this article is part of the process of rebuilding my confidence. Being adept at writing is one of the things that is core to my identity – the pre-psychosis me managed to write Immune, an accessible (and hopefully entertaining) book on the immune system. As well as understanding and processing what had happened to me, I needed to do this to prove post-psychosis me could still write.Pre-psychosis me was also adept at shouting about things in the world she felt strongly about. Yet post-psychosis me seemed to have lost her voice – I found it hard to tell even my nearest and dearest what had happened. However, I also had a gnawing need to act. I felt that part of the reason there were only 17 MBUs in the UK was that women found it hard to shout about this compared with less stigmatised diseases. Looking at the mother-and-baby photos on my Facebook feed, you could be forgiven for thinking new motherhood is some sort of heaven filled with cutesy shoes and blissed-out smiles – but I know that 10–15 per cent of these mothers are suffering from postpartum depression. That’s a lot of sadness hidden behind that impenetrable wall of smiles. I wanted to shout about maternal mental health, and postpartum psychosis in particular. And this is something to be encouraged, said Heron: “When people speak out, other women realise it’s not something to be ashamed of or feel guilty about; it’s a medical illness like any other. It’s shocking, it’s frightening and it’s scary, but women do get better.” In fact, she said, the prognosis is “really good, really positive. Full recovery is definitely the most likely outcome.”
Women who have experienced postpartum psychosis have more than a 50 per cent chance of another episode following a subsequent birth. This leads us to one of the questions I’ve been asking myself: would I risk being shattered once more? I think of the fun and fights and memories and love that I get from having siblings; it’s an important relationship unlike any other. I want Beatrix to have that. However, as you’ll be unsurprised to hear, I’d rather not repeat the last year. There are things that can be done to try and reduce the risks, though nobody seems able to tell me by how much. One measure is to take antipsychotics in the last stages of pregnancy, assuming I’m comfortable with the idea of exposing my baby to these drugs in utero. Another is to be admitted to the MBU for five days post-delivery so I can be watched closely for any signs of psychosis. As Heron told me, “Giving antipsychotics at the first sign of symptoms can prevent episodes from being as severe and long-lived.” So if we do decide to have another baby it should be different next time. And it’s possible I would be psychosis-free. Sally decided not to try for more children; Hannah went on to have a psychosis-free birth with her second child.
It’s a bridge that my husband and I will cross in the future. For now I’m focused on the present and grateful that the MBU and various forms of storytelling – from the stories on APP to my photo diary – have helped me move from a place of acute illness to being at home and well with my baby girl. It’s not a completed journey, there are still ups and downs, but storytelling continues to help me process and come to terms with what was one of the most disturbing experiences of my life. Hopefully by telling my story I can give a voice to the women who are now struggling or have struggled with postpartum psychosis and other maternal mental health problems. Speak to your friends about it, share it and shout about it with me – together we can break the stigma.
This article was originally published on Mosaic and is republished here under a Creative Commons licence.