Recovery from mental illness should not be a matter of luck by Kristen J Lawler
by Kristen J Lawler from her blog https://www.thelittlebigpicture.com/the-madwoman-s-underclothes-1/
I pull up in front of my house and turn the engine off. Through tears, I inhale and exhale noisily with a mixture of relief and fear. Adrenaline is coursing through my veins making my heart pound in my chest and in my ears.
I’ve spent the last two hours lost in a city I used to know like the back of my hand. To be fair, my sense of direction has always been pretty ordinary, but generally, I could find my bearings and cheerfully ‘pooh bear’ my way out of most situations. I no longer have this ability. I panic, become disoriented and then I panic some more. Google Maps just adds to the confusion, and on several occasions have had to tearfully phone someone to help guide me out of some far-flung corner of the city. This confusion and panic are symptoms of PTSD, and although reactions like the one I have just described are becoming much less frequent, the road to recovery has been long and difficult.
When most people think of PTSD, they think of experiences like war or a violent crime or surviving a natural disaster. Another assumption we make is that hospitals are places of safety and healing. Yet my eight-week admission to Royal Adelaide Hospital and later at the Glenside Psychiatric Hospital left me with PTSD and has changed my life forever. It also changed the life of my then teenage daughter, who in doing her very best to advocate for me in a system devoid of compassion and kindness and sometimes logic, also ended up with a diagnosis of PTSD.
It’s a hard story to tell. Not just because it’s still painful, but because my memory of the time has as many holes in it as a coalition climate change policy. Electroconvulsive therapy destroyed these memories, and it is likely that after the passing of five years they are gone forever. It’s hard to process and recover from something you only have a partial memory of. There are other losses that are pretty hard to bear, like my ability to write by hand and my once reliable memory which now some days chokes and splutters searching for words like ‘tree’ and ‘restaurant’. As a singer, I used to pride myself on my ability to memorise lyrics. It is now an enormous challenge.
In the winter of 2013, suffering from psychotic depression, a persistent voice was breaking through all the noise in my head telling me I wasn’t safe. I knew I needed to get to hospital. I had not long moved from Port Lincoln in regional South Australia, where hospitalisation usually meant a week in a hospital room by myself, a fair bit of Valium, and watching the healing blue waters of Boston Bay until the storm had passed. This had become a fairly regular 12-month cycle and although it never really treated my underlying symptoms, in terms of keeping me safe, it worked well enough. My move back to the city was an attempt to access better mental health services.
After waiting for the best part of a day in A&E with my daughter, a very nervous, young registrar assessed me as ‘fine’ saw me and promptly sent me away. As we drove home, feeling dismissed and not heard, a call came in from the hospital. It was the young doctor asking me to return to A and E. In fact, he almost begged. Clearly, he was in trouble with someone more senior. We returned and would wait several more hours before the registrar explained I was being admitted as a voluntary patient, but that if I tried to leave, they would detain me under the mental health act. A confusing technicality in my altered state, but I didn’t really care. I desperately needed to be safe. After this, I would spend almost two days on a gurney in the relentless noise and chaos of A&E, waiting for a bed on the psych ward. There was nothing but a thin curtain between me and a passing parade of wounded humanity - a violent, psychotic man, a weeping drunk with a badly cut hand and an elderly woman in terrible pain.
They finally admitted me into the locked ward. Immediately my phone was taken away. Communication with the outside world had now become something that needed to be negotiated with the indifferent staff. When I become really unwell, I become obsessed with cleanliness and the ward I was now in was ancient, with various shades of ugly green peeling paint and grey scratched windows smeared with permanent grime and graffiti. The nurses mostly stayed locked inside a small glass cubicle cut off from the communal madness. My fellow patients frightened me. There were groans and yells and Tourette’s-like outbursts of racist, sexist and violent language. One man clapped his hands constantly while another patient hurled insults and occasionally threw things, which only made him clap harder and faster. I sobbed quietly into my pillow and my room-mate told me to ‘shut the fuck up’. She looked like she was coming down off amphetamine drug high. I curled myself into a tight ball and tried to make myself invisible. I was terrified. I spent two weeks in C3 Ward at the old Royal Adelaide Hospital. This is the environment in which I consented to have ECT.
From the first ECT treatment, I became manic. I have no idea what other medication I was on. Psychiatric hospitals don’t release this information without a fight. It will take a Freedom of Information request to find out, but my daughter and a friend attempted to tell the medical staff that this was very unusual behaviour for me. My bipolar symptoms had previously involved psychosis, but it was always at the depressive end of the scale. I don’t know how long I went without sleep, but it was some days. After being admitted with psychotic depression, I was now experiencing hypomania, and in this state, curiously I was moved to an intermediary care facility–a halfway point between hospital and home and closer to the ECT suite at the Glenside Psychiatric Hospital. Maybe they needed the bed. Maybe nobody noticed the shift in me from psychotic depression to hypomania. I really can’t say, but I got the impression that no one was terribly interested. There was a complete disconnect between what I was experiencing and the treatment I received. No one seemed to be connecting the dots, other than my 19-year-old daughter and no one was listening to her.
I was dissociated and extremely anxious, but now and then, I would experience some degree of insight and knew that the medication was making me feel worse. Every time they gave me drugs, the world sped up and my heart threatened to pound out of my chest. I would pace and beg staff for help. It was like living in the middle of a permanent panic attack. I continually asked the staff for something, anything that would calm my pounding chest and racing thoughts. My daughter also continued to question the drug regime and was just cursorily patted on the head by a senior psychiatrist who had no interest in talking to her, or me for that matter. She had made her diagnosis, and that was that. You have to wonder why some people choose the jobs they do.
We asked for the ECT to stop and these requests were ignored, or someone would talk me into finishing the course in my daughter’s absence. I began having panic attacks before the treatments and would try to get off the treatment bed. They would hold me down until the general anaesthetic took hold. After the treatments, there would be bruises on my arms and shoulders. One of the regular nurses wore a strong, sickly sweet perfume and five years later this smell can still trigger a panic attack. The nurse who ran the unit was a zealous advocate for ECT and showed me a display book of before and after photos of former patients to convince me that this would be a miracle cure. The ‘after’ shots looked like ventriloquist dolls, their faces contorted into strained, fake smiles. ‘Don’t you want to be in our book?’ she asked.
In this state, I somehow talked the treating Doctors into discharging me and letting me have ECT as an outpatient. My GP still finds this decision extraordinary as does my daughter who felt completely ill-equipped to deal with her hypomanic mother. Again, no one seemed to be connecting the dots. After the first of these outpatient treatments, I got lost trying to drive home, got into a minor car accident (that I evidently drove away from) and became panicked and even more manic. Eventually, my daughter had no choice but to take me back to hospital and continued to explain that this was very unusual behaviour that she could not cope with. She suggested that someone contact my GP of seven years in Port Lincoln, but this advice was ignored. Instead, they gave me more of what was sending me high and gave me a new diagnosis-Borderline Personality Disorder. I’ve since learned that a diagnosis of BPD is quite a common thing in psychiatric hospitals when patients are not ‘compliant’. Eventually, I was moved back to an acute (locked) ward of the hospital and pumped full of antipsychotics and I don’t recall a great deal from here. I know I slept a lot, and the memories I do have are like broken cobwebs; thin, dusty and thready. Days merge into weeks. I know I continued asking for the ECT to be stopped and that this did not happen. My darling daughter continued to exhaust herself attempting to get me the right treatment, but she was banging her head against a wall of medical indifference.
Eight weeks after I had first presented at A&E, I was discharged from Glenside, now suffering the deepest and most persistent depression I have ever known. I was on massive doses of antipsychotics and slept 20 hours a day. I was monosyllabic and had lost close to 20 kg. I would have taken my life if I had the energy and focus, but I had made a promise to my daughter I would stay alive. After all that she had done for me, it was a promise I would do my best to keep. Every morning I would wake and make a deal with myself that I would stay around for one more day. And in this way, day by excruciating day, I kept my promise and survived the year. But it was touch and go.
Now living with regular panic attacks in crowds or confined spaces, I lost all confidence in my ability to function in the world of work and will be forever grateful to a friend who gave me some work cleaning his legal offices during this time. From here I eventually returned to study and bit by bit put my world and my shattered confidence and shattered mind back together. Another turning point was putting together my own treatment team. I found a committed GP, a highly experienced psychiatrist who understood the public system and could shed some light on what had happened to us, and a wise and compassionate psychologist. With time, patience and a willingness to collaborate, these women have re-defined my diagnosis, worked together to reduce medication and have given me the confidence to live life fully again. They are unanimous in their agreement I never had BPD, and that I was medicated far too heavily and with no reference to my previous psychiatric history. There are many that will say the ECT saved their life, but there is also a view that the trauma of the treatment can outweigh any benefit a patient receives from it. For a long time after this experience, I would see myself as broken, as ‘bipolar’ and disabled, but with the help of these wonderful women, I now see myself as someone ‘who from time to time, lives with the symptoms of bipolar disorder’. Those words and these women have played such an important role in my recovery.
With the passing of years, I can now view this experience through a human rights lens. Firstly, there is the issue of ‘informed consent’ around ECT. There’s no doubt about how unwell I was when I first presented at A&E. If that young registrar had said ‘we’ll amputate your leg and trust me, you’ll feel better’, I would have said ‘Yep. Go for it’. It’s hardly informed consent. And what happens if you withdraw that consent as I did numerous times? The clinical model of mental health treatment is fully invested in the tools of ECT, drugs and diagnostic labels, leaving little room for any other approach. Or time. An hour with a good psychologist or lived experience worker during my hospitalisation would have been so welcomed and may have calmed some of my manic, fearful behaviours. It would also have made an enormous difference to the experience of my daughter. I am hopeful that in 2019 that might happen.
But most importantly, I look back on this experience and cannot recall one moment of human kindness from the medical staff. I don’t recall anyone ever saying, ‘It’s OK, it will get better’, or ‘Tell me why you’re so frightened?’. Perhaps those memories have gone, or perhaps people just didn’t have time. In any case, what stays with me, is feeling alone and trapped and terrified. Likewise, my daughter felt alone, terrified and as though she had lost her mum down a rabbit hole. And worse still, for a long time she felt responsible for what had happened to me. It has taken many years for her to accept that none of it was her fault and that she did her very best. Thankfully, she has never doubted how much I loved her for her for dogged advocacy, support and wisdom beyond her years.
A fundamental first step in introducing a human rights approach to mental health means we need to make kindness and connection the basic tenet of mental health care. Surely there can be no other starting point for the treatment of someone with symptoms of mental distress? And also, for the loved ones supporting someone in distress. We need to care more about the experience our carers are having. A system that further psychologically damages people in mental distress and their advocates, is a system that is broken. Diagnostic labels, drugs and hospitalisation are of course useful tools, but what is the point if people come away from psychiatric treatment broken and with no hope for the future? A psychiatrist casually said to me as I was leaving hospital, ‘you’ll be lucky if you ever work again’. It has required a great of determination not to live this sentence. Such is the miracle of recovery.
And I do consider myself one of the lucky ones; despite the psychiatrist's predictions I have recovered. It has taken time and hard work and the ever-present support of my family and friends. I know not everyone is so lucky. And if we are to make sure people have access to their basic human rights, the treatment of people with mental illness should never be a matter of luck. That’s just not good enough.
Kristen Lawler, March 2019