The interview
I’ve written about my grandfather’s experience in a psychiatric hospital, but to date I hadn’t written about mine. I mean it was a lot, and it would be difficult to write about, and I couldn’t see the point. That was until I listened to a podcast interview with Professor Ian Hickie, Busting the Myths around Depression, produced by New Zealand’s most popular current affairs station, RNZ Saturday, and I was compelled to write.
Wanting to make sure I hadn’t misinterpreted Hickie in a short interview I decided to read his book. Having read it, I now feel less angry (less reactive at least) and surer about my reasons for wanting to write. This is not just some psychiatrist who has written a book. He’s the Co-Director 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.
It’s ironic that a book that is supposed to help with my mental health made me feel patronised, unheard and, at times, depressed. Nobody wants to receive the news about having the genes for any type of disease, let alone mental illness. That my problems aren’t so much about the environment I was raised in, but more to do with my biology. And that the talk therapy I found so healing and empowering was a waste of time, as mine was just a sad family at the mercy of its genes.
Or to hear about the benefits of antidepressants, and little about the risks, when I’ve had serious side effects from them (and other psychiatric drugs), and nobody seemed to care. Then to be told that even though I’ve worked so hard using methods such as daily yoga, diet, writing, somatic experiencing therapy, and regard myself to be recovered, I’m not, as these things can only go so far.
Maybe it’s a case of me shooting the messenger, when it’s all there in the science. Yet despite confident statements by mainstream psychiatry about the heritability of mental health and the benefits of medication, there’s so much we don’t know. Scientific breakthroughs that are one small step for mankind are turned into a giant leap for psychiatry.
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 our lives are rich and infinite, encompassing many aspects such as spirituality, race, culture, people’s hopes, dreams and disappointments, etc. And scientists don’t even fully understand how antidepressants work, or how to apply our knowledge of genetics to help develop more targeted medication with less side effects.
It’s disheartening that 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 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 other forms of social disadvantage.
My experience in hospital
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 something 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 people who were best suited to another line of work, and some of my interactions with them caused me huge setbacks. And while I needed medication, I don’t think psychiatry quite recognises the harm that adverse reactions can cause. The best way I can describe my overall experience is to be wrapped in care with all the best intentions, then every now and then a grenade would be tossed in.
When first admitted I refused to take anything. Given it was night-time and I was putting up my best fight, they must have had to call in the on-duty psychiatrist. I remember his brown leather shoes, as they were 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.
I wasn’t anti-medication. I was scared. I had a thing about control as I hadn’t had much in my life. My illness didn’t start with a hormone imbalance and sleep problems after giving birth. I’d had a history of anxiety and depression as well as working hard to overcome them, and there was a lot that brought me to this point.
In fact 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 a good 6 months. Then when I was 11 months old my father who grew up believing his father was dead, got news that he had just died in psychiatric care. Things kinda went downhill from there, though I doubt they were ever good.
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 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 when a nurse came into my room with a small paper cup containing my pills, and soon after taking them I became catatonic. Frozen with my hands pointing upwards as if ready to catch a ball, I was 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 assume I was being given sedative and antipsychotic drugs while in hospital (not antidepressants) and my reaction to them seemed to be accepted as part of the course. Whereas if something goes wrong during medical treatment, there’s an expectation that this will be disclosed and discussed with the patient.
Unable to get any answers I went down a path of being increasingly agitated. I was particularly worried about breastfeeding my son and what might be transferred in my milk. For a period medication time once again became a battle of wills.
I also became paranoid about the motives of some of the staff. For a few nights I couldn’t sleep while hearing staff 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.
I’d had audible hallucinations once before, aged around 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 to sleep. I prefer to call them audible terrors, because that’s what they were. Bedtime wasn’t a safe time for me with my father in the house. And even though I loved my mother, I don’t remember asking for or ever receiving comfort. I don’t think I even knew that was a thing – that some parents provided comfort.
There’s some truth in the saying “ignorance is bliss”. I found out about my grandfather’s diagnosis of schizophrenia around five years ago. If I’d known while I was hearing voices, I might have become convinced I was lapsing into something permanent. I also wonder if the professionals had of known too, how this might have changed the way my illness was perceived. At the time my grandfather was diagnosed with schizophrenia, it was thought to be purely a hereditable brain disease from which people could never recover. And even though we now know this isn’t true, it’s still arguably the most stigmatised mental illness.
A few years back, my son opened up to me about having a bad experience after trying acid a few weeks before. 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 minute felt like an hour and like never-ending torment. I’m relieved that this experience is now behind him. I’d met young people in hospital who were there due to drug induced psychosis.
I had a main psychiatrist, who I started seeing a few weeks before my hospitalisation and who visited me perhaps six times once in care. Our interactions were mostly about medication and trying to get me stabilised. I would describe our relationship as impersonal, and I’m not sure if we even liked each other.
The staff member who would bounce into my room and hand me my medication as if dishing out lollies warrants a brief mention as everything about his approach was off. So too does that constipation that was a side effect of my medication, as it went on for days and days, all-consuming and painful. And the psychiatrist who made a guest appearance and tried talk therapy on me deserves a paragraph or two of her own.
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 who killed her five children after she became unwell with the same condition as mine. (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. During well times if I came across someone like that, I’d recognise it for what it was. That her comments were unprofessional and harmful. But I was hypersensitive and vulnerable, and left feeling very confused. Of all the people I came across during my time in hospital, she’s someone I’d like to see again so I could ask her one question. “What were you even thinking?”
Despite my mental health, I remained strongly bonded with my son and I had never had any thoughts about harming him. But after that I wanted my mother to take him home. He started spending more time with her and would bring him in for visits, and so I could breastfeed him. That was tough on my mother, looking after my dog Pardu and her grandson and coming back and forth to the hospital.
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. Throughout my stay there were also nurses who were caring. I remember one coming into my room and sitting with me when I was distressed. As I’ve been writing, the parts I’ve cried over most are when people were kind.
My friend would visit most days, sometimes bringing food, and always bringing reassurance that I’d get well. He also went into bat for me over the medication. Unable to find out what went on, I knew he was keeping watch over me. Another friend would bring in her oils and massage me and I soaked up her touch. It must be so much harder for people who don’t have a support network like I did.
I missed Pardu terribly and he was allowed to visit on a couple of occasions. There was also the hospital cat who visited me for a period. The staff reckoned could sense who needed comfort.
They started allowing me short visits home where my mother was now staying. On the first of these I refused to return. The policeman and policewoman who turned up must have been trained to not engage. I remember their blank responses as I pleaded with them to let me stay as I held Pardu close, and how I was ushered into a Police car for safe return. I needed to go back, as I was feeling detached and floaty as if stuck in a dream.
At some point I developed a temperature and was placed in a sick room while I waited for an orderly to take me to the main hospital. Seeing it as a way out I used my time and all of my will power, which was running very thin, to try and raise my temperature even more. When she arrived, I was quiet and stuck in my head. While pushing me to the main 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 extended the length of my home visits. On an overnight stay, I could feel the psychosis returning so I rang the hospital. I got the psychiatrist with red hair, who I knew of as one of his patients had spoken very highly of him. 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 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 still not in the form of comfort. I realise now that she needed support too. I wasn’t the only one traumatised by the whole 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 it and put me on 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 did, after I called him numerous times in distress.
I was then put under the care of the maternal mental health team. During regular check-ins about my wellbeing and medication dosage, my psychiatrist and support worker made me feel safe, respected and listened to. 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.
I took antidepressants once more
I wouldn’t have been as angered by Hickie’s interview or felt the need to write, if I hadn’t had a more recent experience with antidepressants that’s still fresh in my mind. Or if I didn’t now consider myself to be recovered, not just from adverse reactions to the antidepressants, but from the whole caboodle that started way, way back when I was young.
Around four years ago when I experienced a number of major stressors that stacked up like toppling dominoes, I didn’t feel I had the reserves to cope. Even though I rebuilt my life after early trauma and the postpartum psychosis I was scared I was falling apart again, and 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.
Hickie might argue that this wouldn’t happen if I’d gone to a psychiatrist with more expertise in diagnosis and prescribing. Yet most prescriptions for antidepressants are issued by GPs who receive the same messaging as we do; that 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. And many people can’t afford to see a psychiatrist until they’re in crisis and it becomes free.
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 worried that the pill that is supposed to help has instead messed with your head. Rather, there appears to be casual acceptance of adverse reactions which are treated with the same importance as if your meds have given you a skin rash.
Psychiatry’s interpretation of antidepressant research, which is often funded by pharmaceutical companies, is that many more people are helped than harmed, and this is their focus. This may be true, and I am in no doubt that antidepressants can work! 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. And the likes of Reddit and Quora, that researchers would likely dismiss as a source of information, 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 answer and mention how long it took to land on the right combination before the real benefits kicked in, or that the benefits outweighed the harm. There’s also discussion about side effects, that in some cases are so serious that they cause long-term damage, or even irrecoverable harm. And threads 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.
If I’d gone to a psychiatrist, I would have likely told them the same things my doctor knew. That I had a lot going on and was struggling big time to keep it together. I was still working. I had a son who had recently left home and was proud of the role I’d played in his life. I’d had postpartum psychosis when he was born. And had struggled with anxiety and depression over the years.
He or she would have likely prescribed me this or that. And if the medication had helped, I would have gladly taken it. But I doubt I would made the lifestyle changes that I have. 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.
After trying the antidepressants and crashing, I sought help from therapists who specialise in trauma and body work. I couldn’t see it at the time, but with good support and my hard work, within two years I would gain a sense of wellbeing beyond I have ever known. I no longer get restless legs and I feel a general sense of calm. My mood is lighter. Though not happy happy joy joy all the time and that’s not how most people’s lives are. And I still make time for plenty of rest and self-care to keep myself well.
Many things have helped with my recovery over the years, and I’ve worked hard. But bodywork was a very big piece of the puzzle that I somehow missed. I’d done some work in that area, but I hadn’t done enough. 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. As well as weekly session with a trauma therapist, I started daily yoga which I continue to this day.
I also had to learn how to breath. I’ve seen many health professionals over the years, and not one had picked up that I breathed faster and shallower than deemed normal. A wonder if breathing is even mentioned in mainstream medical training .
I’ve also come to learn about the healing power of expression, in my case writing and photography. Photography has helped me to feel connected to the world, as feeling disconnected has been huge for me. Writing has given me a voice when much of my life I haven’t felt heard or believed. It helped me through the period when I was unable to work.
My experience in hospital has been difficult to write about as it was confusing, messy and traumatic. And I’m still not sure how I feel about it. After all supporting someone with serous mental illness as I was is never going to be easy or risk free. But I do know that mainstream psychiatry should listen to their patients more, and that rigid ideas about mental illness and an overconfidence in medication continues to cause harm.
[1] https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30534-6/fulltext