18 | Gen
“Our beautiful rainbow family.”
Lizz, Arlo, Gen, & Archie
“I wasn’t opening the blinds because I thought that was a one-way mirror type thing. And I thought, even though it was actually a window looking outside, I thought that it was fake and that people were on the other side monitoring me and that the TV, when it was turned off, was also monitoring me. The little red dot of the TV, that was a recording dot and people were monitoring me. And even the clock was warping... I knew about psychosis generally, but I never, ever in my wildest dreams would have thought I would experience it. I had no risk factors that I knew of and had never had a pre-existing mental health condition before. So I was scared.”
As a psychologist, Gen was familiar with psychiatric wards, but with no history of mental ill health or any risk factors she certainly never expected to be on the ‘other side’ - admitted as a patient to an acute ward shortly after the birth of her son, Arlo.
Following a relatively smooth pregnancy and delivery, Gen’s early postpartum was fraught with mastitis and the eventual development of sepsis. However, the life-threatening infection was surpassed by the rapid decline in Gen’s mental health, with warping clocks and the belief that she was famous, among many other delusions and hallucinations that unexpectedly took hold.
From pacing the halls of a public psych ward for hours to contributing to the design of one of the new public MBUs in Sydney, this is Gen’s story of overcoming her own internal stigma, advocating for better models of care in mental health wards, and the love of her partner, Lizz, who picked up on the red flags when no one else could.
“I'm a psychologist by trade. I'd never worked in the perinatal space, so it wasn't an area that I knew a lot about. But my partner, Lizz, is a mental health nurse, and she's worked across various inpatient settings and had nursed a few people who had experienced postnatal psychosis. So I had heard a little bit about it, but I didn't know a lot, to be honest. And even when I started to, when my mental health deteriorated, I did not at all have any clue what was going to happen next.”
“I think it's important to know that I'm in a same sex relationship. I have a female partner, Lizz, and we now have two beautiful sons. Archie, who is eight, and Arlo, who is three, both very different kids. But that's the makeup of our beautiful rainbow family.”
“My partner actually carried Archie. So I had the very unique experience of being on both sides. Watching my partner go through the IVF process, pregnancy, and then the birth, and what follows the birth as well. Then I was uniquely able to have the position of going through it myself.”
“Several years later, we decided to have a second child. I went through the IVF process. Didn't work the first time around. They were from embryos that I'd had frozen from five or six years earlier. I was 37 at the time. We had no more embryos left. I decided to go through IUI, which is essentially the ‘turkey-baster’ method for those who are not sure, but clinical. That worked first time, which was a shock. And we just were over the moon.”
While Gen had a smooth pregnancy, the stress of the bushfires of 2019-2020 overshadowed this time. “I tend to not be a highly anxious person, but I was pretty worried. I was monitoring the smoke levels in the air because Sydney was blanketed in smoke every single day. I was becoming pretty worried about the impact that would have on our unborn child.”
“I probably had a heightened anxiety, but I didn't think it was out of the ordinary because I thought, ‘Well, I am pregnant and I do want to protect this baby’. So I didn't seek help for it. I did speak to our obstetrician about the impacts on the baby, and he reassured me that it actually couldn't go through into the baby. The smoke couldn't go through. So that relieved my anxieties a lot.”
Gen’s waters broke the night before her last day of work, a month early, and she had a relatively smooth delivery. However, Gen was discharged from the hospital by day 3 or 4 only to represent to the emergency department that night due to mastitis. She was put on IV antibiotics then discharged about 36 hours later.
“So I went home for a day or two, decided to go to Ikea to buy a breastfeeding chair. We weren't prepared. We had nothing. What I now know to be an infection took over my body, and I became very paranoid in Ikea. It was January 2020, Coronavirus was being spoken about. It wasn't in Australia yet, though, but I thought in Ikea that it was over everything. I thought there was Coronavirus on the table. We were in the food hall area. I thought people walking by had it. If somebody sneezed or coughed, I thought they had it and we were going to get it. I was absolutely terrified. I was saying to Lizz, ‘We've got to get out of here. We've got to go. We've got to go. We can't be here. This is a risk. This is not good.’”
Lizz rushed Gen home, but she deteriorated and had to present to the emergency department again.
”We didn't know it was an infection at the time, they were still looking for blocked milk ducts, which I guess is the usual cause. And they weren't finding anything. And they were testing me for all kinds of things. And so they weren't sure what was causing it. But I had presented to ED in sepsis, which is a life threatening illness. And at the time, this is when my mental health deteriorated rapidly.”
“So I started becoming delirious, paranoid. The lights above my head were monitoring me. I thought that they thought I had Coronavirus, and at the time, that was a really scary thing. And yeah, I started to not trust the doctors, the nurses, but I was hiding all of this.”
“So I was eventually, after a lot of testing, transferred up to a room on the maternity ward. But it was like an isolation room because they still didn't know what was causing the illness… I did have visitors coming in. So Lizz did visit me when she could, but she had a newborn at home with Archie, and they were starting to introduce restrictions into hospitals due to COVID.”
“And I thought I was to stay in there. But I wasn't opening the blinds because I thought that was a one-way mirror type thing. And I thought, even though it was actually a window looking outside, I thought that it was fake and that people were on the other side monitoring me and that the TV, when it was turned off, was also monitoring me. The little red dot of the TV, that was a recording dot and people were monitoring me. And even the clock was warping. And I think these are hallucinations… So obviously I shut down a bit.”
“It was Lizz who, unbeknownst to me, was picking up on red flags.”
“There's a few points in my story that I consider myself to be extremely lucky, and that is one of them is that I chose a person who is obviously an awesome person and happens to have the expertise that I needed.”
“I was in between, I guess, a mania where I had a real rapid speech confusion, couldn't think straight to also shutting down, not talking to Lizz like I normally would. So she picked up on red flags and asked for a review by a psychiatrist.”
“I think there was perhaps a thought that it could have been delirium. They finally figured out that it was a strep B infection in my breast milk. They don't know how that happened. I think it's quite rare.”
“They treated me with IV antibiotics for, I think, about two weeks, and I had to wean. I wasn't allowed to breastfeed Arlo. So they weaned me very quickly and rapidly, and my mental health continued to deteriorate. So the infection improved, well, decreased, I guess. And my mental health continued to rapidly decrease or get worse. And that's when they started talking postnatal psychosis because it wasn't improving as the infection was improving.”
“So I went through several days of no sleep, mania, the hormonal changes, shifts, massive hormonal changes, weaning, perhaps some genetic factors, who knows? And infection and sepsis. It was like the perfect storm, to be honest.”
”I was scared. I was scared. I had a lot of internal stigma because I knew about psychosis generally, but I never, ever in my wildest dreams would have thought I would experience it. I had no risk factors that I knew of and had never had a pre-existing mental health condition before. So I was scared.”
Gen hoped she’d be able to go home to recover with the help of a service like Gidget House, but ultimately wasn’t well enough to go home. The solution was to admit Gen to a mental health ward since there were no beds in the mother-and-baby unit. “The concern was also, ‘Well, I'm being separated from Arlo for longer’, which in hindsight did need to happen. I wasn't in a space that I could care for him. And Lizz was getting him into a really good routine at home. So in hindsight, it was best for me.”
“I had been on the other side of a mental health ward, so I had been to them but I had never been a patient of one. And so I was pretty terrified of what that might look like… I went to a public psych ward. They actually gave me some drugs to essentially sedate me, to transfer me, which is not a great experience.”
“I spent a few nights in the assessment ward, which was not a great environment to be in. And then I was transferred to the locked acute ward and it was a strange experience, to be honest, because even while you're in there, there was nobody else experiencing a perinatal mental illness in this ward, which meant that you can't really connect on the same level with the patients that are there.”
“I did make some connections with different patients. I remember a guy very clearly, he and I, he didn't speak much at all, but he and I would play ping pong together for hours. Or another guy and I would be walking, pacing the corridors. It's so boring in there. You're not allowed out. And I know pacing the corridor is not a great look, and you need to look ‘well’ to get out. But I was so bored and I'm usually quite an energetic person. So he and I would pace and have chats along the way.”
“I think the hard thing about being in those wards is you don't know the endpoint. So I do remember having appointments with a psychiatrist and saying, ‘The longer I'm in here, I feel like the worse my mental health is going to get. I feel like I'm deteriorating because I can't have my usual daily coffee. I can't go for a walk outside.’”
“I don't know how I got a hold of my phone. This was in the two or three days that I spent in the assessment unit. I don't know how I had my phone. I have no memory of that. But apparently, I had my phone. I was calling Lizz nonstop because I was convinced that I was going to break out of there and that I was rich and famous, and that people were coming to break me out of there and that there'd be a pack of media. I don't know where these delusions came from.”
“It was distressing for Lizz, though. My constant calling. I've got very little memory of those few days in there. This was her telling me the story. She had to contact the ward and say, ‘Can you take her phone off her?’ Because it was obviously maybe a mania that I was experiencing. My memory is quite shot of the period, but it was really distressing for Lizz to experience that and to have to say, ‘Can you please take her phone off her?’ Because it's a freedom that you don't want to have to have taken away.”
”Lizz had said to me, ‘Can you just do something that you would usually do at home? Why don't you go do the laundry?’ So I thought, ‘Okay, there's a laundry room here. Yep, I'll do my laundry.’ So I grabbed my dirty clothes, walked to the laundry, and the laundry door was locked. But there was a door, it was in this small hallway and there was a door next to it that was ajar. And I thought, ‘oh, there must be a laundry through here.’ So I walked in and I remember there were arrows pointing. So I thought, ‘Oh, better follow these arrows.’ Followed the arrows, it took me to the lift. So I pressed the lift button… Went up, lift doors open, and all of a sudden I am on another psych ward.”
“And it turns out I was on the drug and alcohol ward. I didn't know that that's where I'd ended up. I was looking for the laundry.”
“And not long after, Lizz actually got a job in this facility. And she learned that I was the first person to ever have escaped the locked ward, even though I wasn't meaning to escape.”
“But that meant that I was then being, my rights, this is where the system doesn't necessarily work that well because you have to earn the right to have an hour leave to go and get a coffee or to go to the shop to get a Coke or to go for a walk. And you do something like that and you're almost punished.”
“I didn't understand why every room was locked. I'm like, ‘Why is the laundry locked? And why is the music room locked? And why is the gym locked? And why do I have to ask to access all these things?’ So I now get involved in advocacy work to speak up about models of care and how they do things within mental health units because I think it's important that they are needed and people do need to be there sometimes. But it can be a space that is more like your home.”
“I often speak about the two nurses on that ward that made the biggest difference to me were the two nurses who took me to get a coffee. I go back to that. But they made the time, even though I know they were so time poor, to talk to me like I was a normal human being and to take and get me a coffee. And they had the hugest impact on me. And that wasn't easy for them because they have many patients to look after. And so that's what made a difference to me.”
“I did start writing. Lizz had said to me, I think she said this to me when I was actually in the first hospital, ‘Can you please write down what's going on for you?’ And I've got those books now. And some days it's gobbledygook. And then other days, there's ranting. And then other days, there's really wise questions that I wanted to ask a psychiatrist. It's really interesting reading back through those. But I think getting it out helped.”
“There was a tiny family room that they could come and visit for an hour, I think. But we were stuck in that room because it wasn't a safe environment to take kids in. And so that was it. And then you weren't allowed your mobile phone on you. So there was a ward phone. And if it rang, whoever was closest picked it up and said whatever to the person who's calling. And if they didn't find you or they just hung up, you missed your phone call. So it was a terribly isolating experience.”
“In hindsight, I did need that. It did help me. They got me onto the medication that I actually did need and that did get me to a place that I could then learn or be in a space where I could then start to care for Arlo in the mother-baby-unit. So while it's a difficult experience, I also recognise, and it would have been better if I could have just gone to a parent-baby-unit and skipped that middle one, my situation was definitely that I did need an inpatient stay, and it did help me in the end. It's scary, it's scary because it's the unknown of what might happen to you, to your baby, to your family. But for me, it helped in the end.”
After about two weeks in the public psych ward, Gen was transferred to the mother-and-baby unit. “So I was pretty anxious. I didn't want to go. I wanted to go home, to be honest. I was over being in hospitals. But they essentially said, from my memory, ‘Well, if you don't go here, then you're staying here’. So I took that option.”
“So when the bed opened up and Lizz was able to actually drive me there, I was still quite nervous about going because, again, I didn't know what to expect. And this is probably something that might be quite unique to rainbow families is that often private health facilities are run by religious or faith-based organisations. And so I was quite anxious about that.”
”I know as a same sex couple, it's often hard to present to health services because you're scared of discrimination and prejudice and the way that you'll be treated. But I have to say, throughout my experience, I never had a bad experience and people didn't treat us differently.”
“My anxieties were relieved as soon as I stepped in the door and met the nurses and realised that, look, that's the background of the organisation. But these people who are here, they're here to help us.”
Gen stayed for about two weeks, rather than the standard three weeks, and was able to tailor the program to her needs. “We just fast tracked the program… I ended up speaking up and negotiating a bit of a deal because I also having a psych background, I knew about Circle of Security, I knew about all that stuff. So I didn't feel that that was as beneficial as it could have been for me. So I actually negotiated and had more individual one-on-one sessions.”
“It was really useful in that sense that I was able to build a program that I thought was going to be more useful for me. Yeah, they were accommodating of that.”
“I was conscious that other people were very, very concerned about my bonding with him [Arlo] to the point where it felt actually almost pressure and almost like I had to prove that I bond with him. But that being said, I think over time, my bond with him has not been impacted. I'm as close to him and have such a strong bond with him as I do with our eldest son.”
“I think to begin with, the MBU, the parent-baby-unit, really helped with that bond, helped me build a bit of routine. Seeing Archie and Arlo together, he's such a great big brother and he was so nurturing with him. He would lie on the ground next to him singing nursery rhymes to him as a newborn. It was just adorable. I loved watching those moments and capturing things on little video so I could watch it back.”
“Lizz and I have talked over and over and over again about that first year in particular, and reflected on our different experiences as carer. I hadn't really even thought about her experience of what it was like. But when I went into the parent-baby-unit, the baby was given to me. And all of a sudden, this bond that she'd created and the routine she'd created at home with Arlo, now the baby is taken from her and given to me. And so that was a loss for Lizz that I'd never considered, that now we are able to talk about quite openly together.”
Discharge planning from the MBU presented some challenges as Gen was being discharged into the first Sydney lockdown. “It was another really extremely challenging, I would say, six months to twelve months.”
“Lizz had to go back to work because she'd taken all of her sick leave, annual leave, everything to care for the kids. She didn't qualify for parental leave because she's a female partner and she got, I think, one week partner leave or something. So she had to go back to work.”
“So I had both kids at home, but luckily Archie had started preschool and we spoke to the preschool and they were more than willing to have him attend school during lockdown, knowing that Lizz was a health care worker and that I had been through what I'd been through.”
“I was on antipsychotics for about six months and I was being treated by the community team. I was also being able to connect in with community that way. But during lockdown, my parents, our family couldn't visit us so that nobody met Arlo for I don't know how long it was. Other than the street people, we had the five kilometre radius, so no friends, family, cousins, we had no mother's groups.”
“I did what everybody else did and went for daily walks and tried to keep busy as best I could with the kids in our small little environment.”
”I think the medication helped to alleviate or to reduce the delusions, the paranoia, probably first, and then the delusions. And that got me to a space where I could start to think through what some of the psychologists and psychiatrists had said to me.”
After a few months, Gen experienced what she calls a ‘rebound’ from the mania. “I felt very flat, lost, disconnected. And I was telling the treating team all the things I was trying to do, rather than the flatness that I felt, because I did want to get off the medication, the antipsychotics. But I wasn't myself. I reckon probably 18 months to two years, I wasn't my full self. It really did take a long time to get back to feeling myself again.”
“I think despite my training, you think that you might have been able to pick up on it, but I now know that when you're in a psychotic state or experiencing an episode, that is your reality.”
“I thought I knew about it. But when you then experience it, you realise you have a lot more empathy for people that live with psychosis or people who live with schizophrenia. I now think I feel like I have a lot more empathy, and I can relate to those people in such a different way, which I think has enriched my life and changed my life in a way.”
”I try and view it now as a strength. And it was definitely an experience that has helped me grow as a person and helped me have more empathy. To begin with, there was a lot more internal stigma and disbelief. I didn't like the idea that this is what I was experiencing. I really didn't want to be, didn't like it, didn't believe people. But over time and I find the more I talk about it, the more it helps me to grow as a person, but it helps others to understand it. And I hope it helps health professionals to understand what psychosis is and what helps people through that.”
When reflecting on her experience, Gen had a lot to say about what she wishes society knew about psychosis in general, or postpartum psychosis specifically.
“There is often a stigma that people with mental illness, particularly psychosis, that they're going to be violent or dangerous. And not once was I aggressive, violent. It's a myth that needs to be broken.”
“Within the system, if we were screening for it, as we did with anxiety and depression, we were picking up the women - I would have been probably missed anyway - but if we were picking up women who we know were higher risk based on X, Y, and Z factors, those conversations could be had with that person and their partner while they're going through the pregnancy. So the partner knows this is what to look out for, just in case.”
“I don't want to be alarmist about it. But if somebody is really out of character, that early intervention can make a huge difference.”
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