A cautionary tale about trauma, mental illness and antidepressants
Mental illness and medication – what we’re told
I’d written about my grandfather’s experience in a psychiatric hospital, but not mine, nor my recent experience with antidepressants. Then a podcast interview with Professor Ian Hickie, Busting the Myths around Depression, produced by New Zealand’s most popular current affairs station, RNZ Saturday, left me feeling outraged and compelled to write.
Hickie is the Co-Director of Health and Policy at the Brain and Mind Centre, University of Sydney and has sway in terms of leading the way for mental health services. Even though he talks about new scientific breakthroughs, he’s a voice for old-school psychiatry that emphasises the biological basis of mental illness, an approach which caused so much harm in the past.
It’s ironic that his messaging that’s supposed to promote good mental health, left me feeling patronised, unheard and depressed. Particularly hearing him promote the use of antidepressants and say nothing about the risks when I, and many others, have had serious side effects from them and nobody seems to care. Or to be told that even though I’ve worked hard using methods such as talk therapy, yoga, writing, somatic experiencing therapy, and regard myself to be healed, I’m not because these things only go so far as mine was just a sad family at the mercy of its genes.
Maybe it’s all there in the science. Yet despite Hickie’s confident statements about the heritability of mental health and the benefits of medication, there’s so much we don’t know. And so much that those of us who have experienced mental illness do know through life experience, that at times contradict the established science.
It’s baffling to me how some are taking our limited knowledge of genes to explain the human condition when we’re constantly interacting with our environment and when our lives encompass many aspects, such as spirituality, culture, our hopes, dreams and disappointments. Latest research reflects this complexity.
Science now tells us that mental illness is associated with a complex interplay of a large number of genes and that environmental triggers, such as adverse childhood experiences, can turn these genes on. It also tells us that some of these changes can be passed on to future generations. However, gene expression and subsequent heritability are also influenced by positive experiences such as healthy relationships, developing resilience and maintaining a healthy lifestyle. Rather than giving into the idea of biological determinism, I take hope from the science that shows we can take proactive steps to overcome the circumstances we were born into.
When antidepressants came on the scene in the 1960’s they were marketed under the chemical imbalance theory. We were sold the idea that these drugs target specific neurotransmitters such as serotonin to correct imbalances in a depressed brain. Even though this theory has now been debunked, we’re still lead to believe that they are precise medications targeting specific neurotransmitters. Yet scientists don’t fully understand how antidepressants work. Therefore. ongoing research on developing more targeted and effective ant-depressants with less side effects is money well spent.
The ideas and approaches known to have caused so much harm in the mid 1900’s, the period when my grandfather was hospitalised, prevail today. Just as they did then, some leading voices in psychiatry still exaggerate and mold science to support a world view. In framing mental illness as primarily rooted in a person’s biology, focus is taken away from causal factors such as childhood abuse, poverty, discrimination and the high level of chaos we are currently experiencing in the world. It also takes focus away from developing the skills to navigate and meet such challenges.
Mental illness and medication – my experience
A lot went down during my three-month stay in hospital after developing postpartum psychosis over 20 years ago. I’ve forgotten parts, particularly during times when I was very unwell. I’m also murky about the order, other than having a sense that various things happened in the early stages, mid-way or towards the end of my hospitalisation.
I hold deep reverence for people who work compassionately in mental health, and most of the staff were like that. I also came across some who weren’t suited to the work, and some of my interactions with them caused me huge setbacks. While I needed medication, I don’t think psychiatry adequately recognises the harm that adverse reactions can cause. My overall experience can be described as being wrapped in care with all the best intentions, then every now and then having a grenade tossed in.
When first admitted, a month or so after the birth of my son, I refused to take anything. I wasn’t anti-medication. I was scared of losing control as I hadn’t had much in my life. It was night-time but because I was putting up my best fight, they must have had to call in the on-duty psychiatrist. I remember his brown leather shoes, the first thing I saw from my position on the floor. After enthusiastically complimenting him on his shoes, and sharing a laugh, I looked up to see a very tall man who proceeded to inject me in the butt.
On the morning after my injection, which gave me much needed relief, I woke in the secure wing, and they soon transferred me to the main ward. I was allocated a nurse and my son stayed in an adjoining room. Up until the mid-1900’s mothers and babies were separated if she became psychologically unwell. I can’t imagine what it would be like to be separated from your baby at birth. I was very lucky to receive this wraparound care.
I then willingly took medication until a few days or so into my stay. A nurse had come into my room with a small paper cup containing a concoction of pills, and when I told her I’d already taken my meds, she was adamant I hadn’t. I was compliant, but soon after taking them I became catatonic; frozen with my hands pointing upwards as if ready to catch a ball and unable to move or speak for I don’t know how long. My next memory is waking in the morning with a rash covering my feet.
I was adamant there had been a mix-up. They were adamant that never happened. And while I’ll never know the truth, I do know that the medication caused me to go into a catatonic state. I became worried about what might be transferred in my milk when I breastfed my son and medication time became a battle of wills.
I became paranoid about the motives of some of the staff. For a few nights I couldn’t sleep while hearing them playing loud music and taunting me through the intercom. And though it was a fine edge, through the whole time when I was unwell, a part of me knew what was real and what wasn’t.
I’m not sure how many times I was asked “Do you hear voices?” like it’s the holy grail of questions. And while I never lied, I didn’t tell the whole truth. I said I didn’t as I wasn’t hearing them at the time I was asked. Rightly or wrongly, I was wary it may have changed how I was perceived including the drugs I was being given.
My main psychiatrist was responsible for monitoring my medication to try and get me stabilized. I started seeing him a few weeks before my hospitalisation and he visited me perhaps six times once in care. I would describe our relationship as impersonal, and I’m not sure if we even liked each other or how I feel about him now.
I’m less unsure about my feelings for the staff member who would bounce into my room and hand me my medication as if dishing out lollies as everything about his approach was off. The same goes for the psychiatrist who made a guest appearance and tried talk therapy on me.
Mid-way through my stay I was called to an appointment with a youngish psychiatrist who I’d never laid eyes on before and never saw again. She began by explaining my diagnosis of postpartum psychosis. Then perhaps thinking I didn’t appreciate the seriousness of it, went on to tell me about a mother in America with the same condition who killed her five children. (I’ve just googled it, and I think she was referring to Andrea Yates.)
That’s an example of the doctor-patient power imbalance, and how vulnerable we are to their beliefs and “therapeutic” approach. I wonder if she even wrote that exchange in my notes. Of all the practitioners I came across during my time in hospital, she’s the one I’d like to see again to ask her just one question. “What were you even thinking?”
Despite the psychosis, I remained strongly bonded with my son and never had any thoughts about harming him. After that I wanted my mother to take him home. He started spending more time with her and she would bring him in for visits, and I was able to continue breastfeeding him. That was tough on my mother; looking after my dog Pardu and her grandson and coming back and forth to the hospital every day.
Even though the events that caused me harm are most etched in my brain, the care I received in hospital ultimately helped me to get well. Without the constant presence of my son, I no longer needed 24/7 nurse care. I was lying in bed one day, deeply depressed, when the psychiatrist with the brown shoes walked in with my elderly gynecologist, and they showered me with kindness. As I’ve been writing, the parts I’ve cried over most are when people were kind.
Throughout my stay, many of the nurses remained caring and professional, even during times when I was agitated and “acting out”. I remember one coming into my room and sitting quietly with me for a long period when I was distressed. They also allowed my dog Pardu, who I missed terribly, to visit on occasion. There was also a hospital cat who it was believed could sense who needed comfort. At one stage she must have decided it was me, and she hung out in my room for days.
I developed constipation, a side effect of my medication, that went on for weeks and was all-consuming and painful. I also developed a temperature and as I waited in a sick room for an orderly to take me to the medical hospital, I used this time and all of my willpower to try and raise it even more. My goal was to stay there.
When she arrived, I was quiet and stuck in my head. While pushing me to the medical hospital she talked to me the whole time, about her life and her children. I’m not sure I responded, but I definitely listened. I remember feeling soothed by her stories and how she was speaking to me as she would any other patient. That was a turning point for me in starting to come down from the psychosis and I’m sure she has no idea.
They started allowing me short visits home where my mother was now staying. On the first of these I refused to return. The police officers who turned up maintained blank responses as I pleaded with them to let me stay. They must have been trained not to engage. I needed to go back, as I was feeling detached and floaty, like I was stuck in a dream.
The length of my home visits was extended. During one overnight stay, I could feel the psychosis returning so I rang the on-duty psychiatrist. When I told him I was playing Scrabble with my mother and that all the words seemed to have a deeper meaning, he was like “cool”. I was comforted by our conversation and the fact that he didn’t seem overly worried.
After three months in hospital and with psychological and practical support in place, I returned home where my mother was still staying. She definitely stepped up when I became unwell, though not in the form of comfort. I realise now that she needed support too. I wasn’t the only one traumatised by my whole postpartum experience.
I also returned home with a prescription of Aropax (an SSRI antidepressant) as depression after postpartum psychosis is common. On taking it, I became so confused that I couldn’t work out how to turn on the TV or tell the time. Scary stuff, given I had just spent months unsure if I’d ever experience any degree of sanity again.
Next came extreme agitation when my main psychiatrist took me off the Aropax and replaced it with Dopress (a TCA antidepressant) that I eventually did much better on. He never told me that quickly coming off medication (rather than the recommended slow tapering) can cause withdrawal symptoms. The man on the Crisis Team (who had escorted me when first admitted and who I came to view as a source of support) explained this after I called him numerous times in distress.
I was then put under the care of the maternal mental health team and had regular check-ins about my wellbeing and medication dosage. I liked my psychiatrist a lot, in particular his sense of humor and warmth. I also felt unjudged and well supported by my case worker who would visit me at home. After about a year, when I felt well and strong enough, I was able to slowly taper off the Dopress and rebuild my life as I raised my son.
Intergenerational Trauma
My illness didn’t start with a hormone imbalance and sleep problems after giving birth. I’d had a history of insomnia, anxiety and depression and had worked hard to try and overcome them.
The year I was born was a particularly bad one for my family. While my mother was giving birth to me and during her convalescence my two brothers (5 years and 18 months) stayed in Salvation Army care and my sister stayed with relatives. My oldest brother, who recently participated in the Abuse in Care Inquiry, came home with an eating disorder and my other brother came home mute and stayed that way for around a year. Then when I was 11 months old my father, who grew up thinking his father was dead, got news that he had just died in psychiatric care. Things went downhill from there, though I doubt they were ever that good.
I’d assume the doctors in hospital were screening for the type of mental illness I was experiencing when they asked if I heard voices. I’d had audible hallucinations once before, at around the age of six. They’d come when I was put to bed and lasted for some months. I didn’t hear legible words, rather a deep scary voice whirring around and around like a squeaky wheel until I fell asleep. I prefer to call them audible terrors. Because it wasn’t safe with my father in the house.
There’s some truth in the saying “ignorance is bliss”. I didn’t find out about my grandfather’s diagnosis of schizophrenia until around five years ago. If I’d known while hearing voices in hospital, I might have become convinced I was lapsing into something permanent. I also wonder if it would have changed the way my illness was perceived had the professionals known too. In my opinion, psychiatry takes a simplistic approach to schizophrenia in treating it largely as a brain disease, often passed down through generations. They downplay the role of trauma.
A few years back, my son opened up to me about having a bad experience after trying acid. But that’s not how he phrased it. He said “Mum, I think I’ve got the mental health problems that run in our family”. He’d got stuck in time, something I’d experienced at one stage in hospital, when a second felt like an hour. It was like never-ending torment as if I was stuck in some form of hell. I’m relieved that this experience is now behind him.
In families that have experienced intergenerational trauma, finding a safe and supportive adult, amongst nuclear and extended family, can be difficult as there’s often a wall of silence. It’s also the exception, rather than the rule, for siblings in adverse parenting situations to be able to support and comfort each other. Rather as children they tend to model adult behaviors and also vie for limited resources, particularly love.
Families, such as mine, are also likely to have a history with members who have been in institutional care. In some cases, rather than helping to break the cycle of trauma, these institutions cause harm. We have certainly seen much improvement in psychiatric care since the period when my grandfather was admitted, but as I believe my story illustrates, we still have some way to go.
Trauma, chronic illness, medication – what can happen
What doesn’t kill you makes you stronger (Friedrich Nietzsche)
That statement’s debatable. In fact, Nietzsche – the guy who originally said it – suffered a breakdown when he was 44 years old and remained mentally and physically unwell until his death 11 years later. The truth is, despite working hard to overcome trauma, many of us end up with a chronic health condition as well as being on medication.
Around four years ago I experienced a number of major stressors that stacked up like toppling dominoes and I didn’t feel I had the reserves to cope. I’d worked hard to rebuild my life after early trauma and the postpartum psychosis, yet here I was falling apart again. Even though I was very wary, going to the doctor for medication was the only option I thought I had.
They say it’s normal to experience initial side effects when starting an antidepressant but mine intensified. I became increasingly wired and disassociated. The problems I’d had with an overstimulated brain and insomnia over the years got worse. And the restless legs that sometimes turned up when trying to sleep were now there every night. I also had a brief psychotic episode – something I hadn’t experienced since the postpartum psychosis over 20 years ago. A month or so into taking them, I was left incapacitated and unable to work.
Psychiatry’s interpretation of antidepressant research, of which around 80% is funded by pharmaceutical companies, is that many more people are helped than harmed, and this is their focus. We are told they are safe, effective and non-addictive. And the fact that they are intended for short-term use alongside lifestyle changes is not always conveyed. I think it’s important to note that Hickie receives funding from pharmaceutical companies.
I have no doubt that antidepressants have their place, but pushing them out into the world with rose coloured glasses is misleading. Online communities, such as Surviving Antidepressants, are evidence of demand for support for people tapering off psychiatric drugs. The likes of Reddit and Quora, that researchers would likely dismiss, are places for open discussion about antidepressant use.
In discussion threads many attribute antidepressants to saving their life or staying well. Others provide a more nuanced response and mention how long it took to land on the right combination before the real benefits kicked in, or that the benefits outweigh the harm. There’s also discussion about side effects, that in some cases are so serious that they cause long-term damage, or irrecoverable harm. There are threads, too, about debilitating withdrawal symptoms that psychiatry often attributes to the person having a relapse. There is also mention of breakthrough depression that can happen after long-term use.
I don’t blame the doctor as she was caring and thorough and was working with the information she had. And I’d gone there to discuss medication. But surely the medical system, in particular pharmaceutical companies, should be more concerned that the pill that is supposed to help has instead messed with your head. Rather, there appears to be a casual acceptance of adverse reactions that are treated with the same importance as if your meds have given you a skin rash.
Side effects have become an industry in itself. On a recent trip to the States, I was gob-smacked by the absurdity of adverts for antidepressants showing happy people who had managed to get their lives back. At the end of these adverts the narrator would quickly read a list of possible adverse reactions, obviously a requirement of advertising standards. I was particularly interested in the mention of tardive dystonia and tardive dyskinesia, having developed an involuntary twitch in my neck for a period and being unsure if it was brought on by stress or medication, or perhaps both.
This advert would be followed by another, for a medication to treat one of the side effects listed, and showing more smiling people. I know people like that, whose lives revolve around taking a growing range of medication to manage mood and pain and to also manage the side effects of their medication. They’ve also had a lot of traumas in their lives.
If the anti-depressants had helped, I would have gladly taken them. But I wouldn’t have made the lifestyle changes that I have. Or been able to stop taking the sleeping pills I’d regularly used for many years. And while there’s nothing like calamity to encourage you to change your direction and to learn new things, I wish I’d done and learned them years ago.
I had viewed my struggles largely as psychological; struggles that often felt intangible and which I constantly grappled to release and overcome. I didn’t understand the extent of the physical injury I had also suffered from early and ongoing traumas, and what I needed to do in order to heal and maintain good health. I’d done work in this area over the years, meditation, exercise, the odd yoga class and a healthy diet but I hadn’t done enough.
Recovery – what I now know
Trauma can be understood as an overwhelming emotional experience that lacks a relational home (MaryCatherine McDonald)
McDonald’s definition of trauma captures the importance of having support during times of crisis. Being comforted also comforts our nerves. In her 2023 book Unbroken: the Trauma Response Is Never Wrong, McDonald discusses the latest science on how trauma can change our bodies, including our brains. It’s not a weakness or flaw, rather a natural response to events, not unlike an injury. If we haven’t experienced the right conditions to heal, our bodies will continue to carry the burden of trauma.
Ideally when something “bad” happens, children seek comfort from their parents or other family members. Sometimes this comfort isn’t forthcoming, particularly when caregivers are the source of the trauma, or are emotionally unavailable. If that’s the case, another caring adult can become this support. This can be in the form of a professional, such as a therapist.
When we’re old enough, there are many reasons why we don’t reach out for this support: shame, lack of trust, finances, etc. I tried in my late teens but after two sessions with a psychologist that included long moments of silence and deep burning shame I never returned. I internalize this ‘failed” attempt as something wrong with me and tried to stuff everything down. I wish I’d found somebody else as I’ve come to learn that not all therapists are suitable for every person. But there weren’t many options for me at the time. Now there’s far more free services as well as information about abuse and trauma available.
We see the impacts of not having a relational home in many who participated in the Abuse in Care Inquiry. They weren’t believed, when trying to disclose the abuse to those who were supposed to care for them. With no support or validation, this population has seen a high incidence of chronic illness, addictions, poor mental health and suicide. In their interviews, some talk of finding a support person later in life, in the form of a relationship or a therapist, or both.
I didn’t talk about my childhood until I was in my 30s and I met somebody who I opened up to. I was at a very low point both physically and mentally and couldn’t see a way forward. He stood by me and saved my life. Then some years after the post-partum psychosis, I saw a psychologist. Having someone professional and skilled listen and validate how I felt has been a very important part of my healing.
I’ve also come to learn about the healing power of creative expression, in my case writing and photography. Photography has helped me to feel connected to the world, as feeling disconnected has been a huge part of my experience. Writing has given me a voice when, for much of my life, I haven’t felt heard or believed.
Many who live with complex trauma become what you might call high functioning, and manage to achieve despite having poor mental health. I gained university qualifications even though I’d done poorly at school, I represented my country at soccer (I had loved movement and sport when I was young) and I became a mother. I believe reaching for goals, whatever they may be, is an important part of recovery.
Despite having good support and having done a lot of personal growth, I remained in a cycle of crash and burn. After trying the antidepressants and being left incapacitated, I sought help from therapists’ who specialise in taking a body-centered approach to trauma therapy.
My recovery hasn’t been a straight line, particularly in the early stages when I was coming off the medication. But with good support and my hard work, within three years I have gained a sense of wellbeing beyond that which I have ever known. I no longer get restless legs, I feel a general sense of calm and my mood is lighter. I’m also happily doing things that I found stressful or tiring in the past, such as travel and having more social interaction.
It seems so obvious now that living with a dysregulated nervous system (either under or overactive as mine was) that can make us tired and irritable, also makes us feel anxious and depressed, and sometimes unable to cope. In working to calm my nervous system, I’ve needed to grow my window of tolerance for relaxation. Trauma survivors become hypervigilant for good reason and we’re not suddenly going to feel safe about dropping our means of protection.
If we’ve lived with trauma and stress for many years, it can get trapped in the body. Sometimes my therapy sessions focus on releasing these blockages, using the likes of body-centered talk therapy and somatic experiencing therapy.
It was an OMG moment when I was referred to a Respiratory Physiotherapist. I’d never heard of that – a physio who teaches you how to breathe. I only knew about breathing techniques to use when anxious. As I became more aware of my own breathing, I began to notice how many other people breathe shallower and faster than normal. No medical practitioner had ever picked up on my breathing. I wonder if this is even covered in their training. I now practice focused breathing every day.
Yoga is another daily practice that I started and have continued. I came to know that my body needed lots of yin input (slow and calm). At first this felt arduous as I had always had trouble being still. Now I’ve come to enjoy the sense of rest and vitality that this slow form of exercise brings me.
While I’ve tried to eat a healthy diet for a long time, I didn’t always feel the benefits, and I’d sometimes give up. Now with patience and persistence I can clearly see the relationship between good food and feeling good.
I’ve learnt to become master of my own wellbeing through paying close attention to feedback in terms of what’s good for my body and mind, what isn’t, and what is enough. I’ve also learnt to be present and kind to myself in terms of where I’m at. I don’t have as much capacity for doing as I did in the past, but I’m very happy living a gentle and sometimes slow life.
Alongside MaryCatherine McDonalds’ book, another I found to be particularly helpful is Cured: Strengthen Your Immune System and Heal Your Life by Jeffrey Rediger. Both provide research-based tools to aid healing, as well as stories from people who have overcome trauma and other health challenges. Hope, and that healing takes time, are two key take-outs from Rediger’s book.
When I ask my younger self what she could have done differently, my honest answer is that she was doing her very best based on the messaging she had received and what she believed. My hope is that our new knowledge about trauma will see more people recognise the importance of safe and supportive connection, and committing to a body-centred approach to healing and navigating the difficult times we currently live in. I also hope that we will see a move away from biological determinism and that we become more cautious about treating mental illness with medication.