Mad Pride

Mental Health Survivors on Institutions, Recovery and What Actually Helps

Here are some voices of experience from inside the New Zealand mental health system.

by Tess McClure
11 December 2017, 4:30am

As the NZ government begins its inquiry into the state of the mental health system, we wanted to hear what those with direct experience of it had to say. We spoke to four New Zealand women with inside knowledge of New Zealand’s psychiatric institutions about their unique mental health journeys. Here they are in their own words, with what helped, what hindered, and what got them out the other side.

Note: this story contains frank discussion of suicide, which some readers may find distressing.

Jemima in her garden in Dunedin IMAGE: Gabrielle Devereux

JEMIMA LOMAX-SAWYERS

In school, I won the joke prize of ‘most likely to go to prison’. I wasn’t exactly rebellious, in fact, I was an overachiever. But it’s scary how that joke prize in a way came true. A week after my 18th birthday, I tried to kill myself. That’s how I ended up in institutional care.

Being suicidal is hard to explain. On the one hand you know how much it will hurt your loved ones. On the other hand, you feel certain that they will be better off without you and the pain is just too much to handle. When you're well, you know this isn't true. But that's impossible to believe when you're in the middle of it.

After two nights in the hospital, I was transferred to the adult psychiatric ward. I had never talked to anyone about my mental health before, not even my GP. And here I was, having the drawstring from my sweatshirt removed and my shoelaces confiscated.

I was in hospital for a long time, on and off for about a year, with treatment-resistant depression. Nothing was working. Suicidal, paranoid and depressed, I stopped taking my medication. I was subject to a Compulsory Treatment Order at the time, and my psychiatrist decided that involuntary electroconvulsive therapy (ECT) was the best treatment option.

ECT involves placing two electrodes on your head, which administer an electric shock, inducing a seizure. The evidence around why it works is inconclusive, but the brochure I was given stated that it works for around seven out of 10 people. There is a lot of discussion out there about how badly it can affect your memory and cognitive abilities that I spent way too much time reading online. I was terrified the first time I had it; I thought it was going to give me brain damage. It’s a controlled procedure—you go under a general anaesthetic and get a muscle relaxant so you don’t thrash about. But you couldn’t try telling me that.

After seven treatments, I started flat out refusing to go, so that was that. Did it work? I didn’t think so at the time, but in retrospect it did a little. My discharge notes state that post-ECT there was “less sleep disturbance and reduced psychomotor agitation”. While it wasn’t exactly pleasant, I’m grateful to the psychiatrist who made that decision.

Then in 2014, aged 20, I attempted suicide again. This time, I gave my consent for another course of ECT. While I was still terrified, it felt much more empowering having it on my own terms. I noticed an obvious change after 4-6 treatments. Things just didn’t seem quite so heavy. Before, living my life had involved not only keeping myself upright, but also carrying a massive weight around with me that I never seemed able to put down. I was less paranoid and more hopeful. I didn’t feel 100 percent—it isn’t a magic fix-all—but well enough after a few more treatments to be discharged from hospital and keep living my life.

"I’m hesitant to exclaim that this is it, that I will never get unwell again because I just don’t know. Maybe I will, and I have to be prepared for that. But I am hopeful that at least for the most part I can maybe do something with my life, other than just barely getting by."

Fast forward to 2016. Working full time, I’d stopped taking my medication, believing it was poisoned. After a lot of pressure from my treatment team and family, I began taking my medication again. The antipsychotics helped to lessen the paranoia, but my mood continued to deteriorate and I was hospitalised in August. ECT was started almost immediately. After a month, I was well enough to go back to work, assisted by an incredibly supportive boss and colleagues. I continued to have maintenance ECT until I moved to Dunedin for university.

I have begun treatment on ketamine, known in the party scene as ‘Special K’. It is also an extremely fast-acting treatment for depression. And it really does work, even if the experience is a little trippy: Just an hour after the injection I feel lighter, and actually have enough energy to perform basic tasks.

I’m hesitant to exclaim that this is it, that I will never get unwell again because I just don’t know. Maybe I will, and I have to be prepared for that. But I am hopeful that at least for the most part I can maybe do something with my life, other than just barely getting by.

ECT has a bad reputation. People call it “electric shock treatment” and think of that scene out of One Flew Over the Cuckoo’s Nest. Truthfully? I wouldn’t be alive without it. That’s not to say it’s the right option for everyone, just that at the time it was the only treatment that helped me, and for that I am very thankful.
I will say this: maybe it doesn’t have to be about how I ended up in this situation, but where I am going from here. Because I didn’t just win ‘Most Likely to go to Prison’ at school. I was also voted Most Likely to be Prime Minister. And the essence of that is the one I intend to have come true.

MARY O’HAGAN

I began to experience major mental distress at my first year of university. I called them mood swings, they called them bipolar disorder. Initially that started off with going to see a psychiatrist at student health, and then after a while the psychiatrist put me on some drugs and then a while after that I ended up in the hospital. And over the next several years I had many, many admissions into hospital. I think going into the hospital was a significant event, in that you were really identified as a crazy person—if you had to go into the hospital you were a crazy person, whereas if you just had to go see a psychiatrist in a clinic to get some drugs or have psychotherapy, that wasn’t nearly as transformative as far as your social status went. What happened when I went into that system was what I called a "stripping". The first thing they did was they said "take off your clothes and get into these nighties". Then they sort of put all your possessions away into a property bag and locked it away in a store room.

"One of the awful things about being diagnosed with a mental illness as they call it, is that people don’t believe your perceptions, and they tend to think that you know, any anger or sadness or whatever you feel, is a marker of your illness, rather than a thing that comes from your core-self."

And then the stripping became much more internal, as I realised that as a person in that system I didn’t have that much credibility. One of the awful things about being diagnosed with a mental illness as they call it, is that people don’t believe your perceptions, and they tend to think that you know, any anger or sadness or whatever you feel, is a marker of your illness, rather than a thing that comes from your core-self. I was told, probably about the age of 20 or 21 that I had a major mental health diagnosis, that it would dog me for the rest of my life, that I’d never be able to come off medication and that I wouldn’t be able to have a career, that I should really think very carefully about whether I wanted to have children or not, because the theory was that I had a genetic defect that I could pass on to my children. I remember reading my notes after I got out of that system, and three months before my last hospital admission my psychiatrist wrote that I had a chronic disability. And I’ve disproved them on every point.

During that experience they didn’t ask me once what I thought would be helpful, they just saw me as this kind of bundle of needs and incompetence that needed their help. They didn’t really see me as a person who might be learning from this experience, might be developing some strengths, or who could get over this experience or move on to a different phase of my life. And what they had to offer me was pills, pillows and psychotherapy. What I wanted was to learn how to self-manage better but they didn’t understand what I meant. Some of the drugs were helpful sometimes. I think being in a sheltered environment was helpful, although it didn’t need to be a hospital ward, it could’ve been a house or a community. So really, it may have been helpful in a narrow sense where they kept you off the street or kept you safe for a little while and used these drugs to knock some of the more troubling experiences, but they were absolutely no help in assisting people to get from this difficult space in life to a better one.

In a way it [my recovery] is a bit of a mystery, but some of the things that helped were that I questioned the narrative. I realised, well actually that’s just one narrative about people like me and there are others, so that was incredibly important. Learning how to self-manage was really important. And I think having people who believed in me was incredibly important. People who didn’t give up on me. Being able to get a job where I felt I was being useful and making a contribution was pretty important, having relationships. And I think, one or two of the drugs they gave me were helpful, but that’s really the last on that list, and that was the only thing that was provided by the people in the mental health system.

I had my last admission to hospital when I was 26—decades ago—and I had a few mood swings after that. I was on medication for quite some time, but I’m not on medication any more. I get a bit low sometimes but I mean, that’s just a part of human existence. I don’t get so low that I have to stay in bed or I can’t go to work, I just feel a bit miserable sometimes. So none of that came true. I’ve worked for many, many years. I’ve had children, and they’re all doing fine, they don’t have my supposedly shonky genes. So no, none of it’s come to pass. I think what happens with people in that system is that they keep seeing the people that keep coming back—and they forget about the people who were there once, and went away.

Jazz now runs her own mental health support organisation, Voices of Hope. IMAGE: Tess McClure

JAZZ THORNTON

When I first tried to take my life I was 12 years old. I don't know if back then I knew that if I succeeded I would never wake up again, but I do know I just wanted the pain to end. Throughout my teenage years, I tried another 13 times with one landing me in a coma. The last time I tried to take my life I was admitted into the mental health ward for a month and a half on intensive suicide watch.

It was terrifying. I remember I got transferred to the ICU of the mental health ward at around midnight and I had no idea what to expect. I was diagnosed with complex PTSD and severe depression and it really felt like no matter what I did, nothing was ever going to change. My core beliefs were 'I'm unlovable' and 'I'm a burden' which dominated my every thought. While I was in the ward I met an incredible nurse who constantly spoke about my future, despite it, in my eyes, looking pretty bleak. To this day, I believe that she was key in my recovery.

"I realised in that moment that if I had been surviving this whole time, and fighting could save my life, then I was ready to give fighting a go."

The turning point however, was a conversation I had with my mentor. I was a crying mess and I remember her looking at me and going "Jazz, why are you crying?" and I said "I am just so tired of fighting." She then said "What do you think the definition of fighting is? I don't think you are fighting, you are just surviving... You need to learn how to fight and that's when the change you are longing to see will happen." I realised in that moment that if I had been surviving this whole time, and fighting could save my life, then I was ready to give fighting a go. I googled the definitions of fighting and surviving and I started to do a whole lot of practical things that in time, really did save my life. It was things like writing my core beliefs on one side of a piece of paper and then on the other writing things those closest to me had said or done that contradicted those beliefs, like saying "I'm proud of you" or "I love you" or the simple fact that they knew me inside and out and still chose to walk alongside me.

I now have the incredible honour to use my story and experiences to help walk alongside others, teaching them how to no longer battle their past, but fight for their futures and their freedom with my organisation I co-founded, Voices of Hope.

Soong in her garden in Auckland. IMAGE: Tess McClure

SOONG PHOON

At the start I was in the Philippines, and I was 13, and I started getting really depressed. I first went to see a psychiatrist there, and they were like, "You’re bipolar." So I got a diagnosis at 13, quite young, but nothing really came of it because I was quite bad at taking meds. I first tried to kill myself when I was 17. In the Philippines you have household help, and one of them found me. My parents were like, maybe she’s just really unhappy here [in the Philippines] and needs to go back to NZ, where her friends are. I came back here, and I was fine for a while—but always a bit uneven.

I went on meds again when I was, I think, 21. Then I planned it, and made another, very serious attempt. It just so happened that a friend of mine was worried about me, and he came to check up on me that night, and found me. Through all this, I had such good friends. I bounced back quite quickly, but then this happened a couple of times, attempting or making plans. The last [attempt] I planned for like a year. The last time was quite severe, and they were like, ‘We have to commit you.’

By the time I got into hospital I was almost catatonic, with the depression. They put me in the intensive ward—there are 13 beds there, and some are under constant supervision, some being checked every 15 minutes. I was there for around nine months. They were like, you need to have ECT [Electro-Convulsive Therapy]—because they’d tried me on all these different meds, and I’d go up, and down, and just try to kill myself in really creative ways.

"It’s always a constellation of things that mean you get sick in the first place. And so it’ll be a mix of things that help you get better."

I was really lucky, because my family and friends came to visit me every day. They were amazing. One friend wrote me a letter every single week. There were a certain number of visiting times a day, and one friend co-ordinated everyone, mapped out all my visits. When it was my birthday, they came into hospital, brought me gifts. I think that was important—to feel very loved is so important—but at the same time, you couldn’t totally process it because you’re so depressed.

I know so many people have had bad experiences [with the mental health system], but I had a good experience. I’m lucky: They were just so dedicated to making me feel more human. One of my doctors was just the loveliest woman, and she was the only one who could really cheer me up a little. She used to come and talk to me for half an hour after her rounds finished at 9.30 each night. I had like 32 rounds of ECT. My doctor talked to the head of the clinic, and he was like, I think you should try her on ketamine—which was, at the time, pretty controversial. That worked, but I came down pretty fast. And after that, the doctor was like, I think maybe you’re just highly, highly anxious—let’s put you on valium and diazepam, and after that I was just so much better—with the ECT, the ketamine and that all in conjunction.

I remember it was my birthday, and all my friends came round to my parents house, and had a couple of beers, and then we went to see The Wolf of Wall Street. That was like my ‘outing’. I really had such good friends. After that, I was discharged, I went back into the community.

It’s been four years now. After a few months, I got a job in advertising. And it’s so hard not to talk about it—it’s like, part of your identity. You’ve been there for nine months. So I’d be like “I just got out of hospital, and I had ECT, and ketamine,” which is maybe not that normal. You don’t want to make people upset—like, "Oh I’m so sorry"—but at the same time that’s just where I was. It’s like going away on a trip. Sometimes I’m like, maybe this was my OE. But actually, I did learn a lot. I think there’s still a little bit of stigma—or there can be. Like when I was first out of hospital in 2013, it was like, should you tell your boss? Should you say you need to leave work early one day to see a therapist?

It really is an illness—when you can’t move, because of the depression. It’s like something that chases you, and jumps on you and you just can’t get up. But sometimes now, still, I look and I’m like, hmm, might just have to move a bit faster otherwise that thing is gonna jump on me again. You don’t feel so good, so you need to do something. Go walking. Cooking is really good for me. Having friends and family to be accountable to is helpful. I found a really good therapist. I had family, really good friends. Maybe things like that sound basic, but I think, it’s always a constellation of things that mean you get sick in the first place. And so it’ll be a mix of things that help you get better.

This series was made with help from Like Minds Like Mine and the Mental Health Foundation.

Need to talk?
Free call or text 1737 any time for support from a trained counsellor
Lifeline – 0800 543 354 or (09) 5222 999 within Auckland
Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)
Healthline – 0800 611 116
Samaritans – 0800 726 666

Follow Tess on Twitter: @tessairini