Recovery from mental illness should not be a matter of luck
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 still 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 speaking, I was able to 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. The voice of Google Maps continually correcting me, just adds to the confusion, and on several occasions have had to tearfully phone someone to calm me down and help guide me out of some far-flung corner of the city. This confusion and panic are symptoms of PTSD. Reactions like the one I have just described are becoming less frequent, but the road to recovery has been long and difficult.
We assume that hospitals are places of safety and healing. But my eight-week admission to Royal Adelaide Hospital and later at the Glenside Psychiatric Hospital left me with PTSD and has changed the course of my life forever. It also changed the life of my then teenage daughter, who in doing her very best to advocate for me is a system devoid of compassion, kindness and at times 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. These memories were destroyed by electroconvulsive therapy 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 big losses like a career and a home, the consequences of which will ring through my life for many more years to come. There are smaller losses like my ability to write by hand and sign my name. I have re-learned these things, but it still feels like small, important pieces of me have been taken away. And every single day I am reminded of the loss of my once reliable memory which now chokes and splutters, sometimes searching for words like ‘tree’ and ‘restaurant’.
In the winter of 2013, suffering from psychotic depression, there was a persistent voice breaking through all the noise in my head telling me I wasn’t safe. I was regularly making suicide plans and 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 hospital in a room by myself, a fair bit of Valium, and watching the healing blue waters of Boston Bay until the storm in my mind had passed. This had become a fairly regular 18-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 the best part of a day in A&E with my daughter, I was seen by a very nervous, young Registrar who assessed me as ‘fine’ despite me describing multiple ways in which I might take my own life. After a short consult, he promptly sent me away. As we drove home a call came in from the hospital. It was the young Doctor asking me to return to the hospital. In fact, he almost begged. Clearly, he was in trouble with someone more senior. We returned and would wait several more hours before the Psychiatric Registrar explained I was being admitted as a voluntary patient, but that if I tried to leave, I would be detained under the mental health act. A confusing technicality in my altered state, but I didn’t really care. I just desperately needed to be somewhere 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.
I was finally admitted into the locked ward. My phone was immediately taken away. Communication with the outside world had now become something that needed to be negotiated with the indifferent staff. When I become very unwell, I become obsessed with cleanliness and the ward I was now found myself in was very old, with various shades of peeling green paint and grey scratched windows smeared with permanent grime. I felt as though I had landed in Hell. The nurses, for the most part, stayed locked inside a small glass cubicle cut off from the communal madness.
I was frightened by my fellow patients. 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 ‘the clapping man’ clap harder and faster. I sobbed quietly into my pillow and was told by my roommate to ‘shut the fuck up’. She looked to me like she was coming down off an amphetamine drug high. I curled myself into a tight ball and tried to make myself invisible. I was utterly terrified. I spent two long weeks in C3 Ward at the old Royal Adelaide Hospital. This was the environment in which I consented to have ECT.
From the very 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 this out, but my daughter and a close 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. Having been admitted with psychotic depression, I was now experiencing hypomania, and in this state, I was curiously moved to an intermediary care facility – a halfway point between hospital and home and closer to the ECT suite at Glenside Psychiatric Hospital. Maybe they needed the bed. Maybe nobody noticed the shift in me from psychotic depression to hypomania. I really couldn’t say, but I did get 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 18-year-old daughter and no one was listening to her.
I was often dissociated and extremely anxious, but every now and then, I would experience some insight and knew that the medication was making me feel worse. Every time I was given medication, the world sped up and my heart threatened to pound out of my chest. I was 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 cursorily patted on the head by a 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 be stopped and these requests were ignored, or someone would talk me into finishing the course in my daughter’s absence. I began to have panic attacks before the treatments and would try to get off the treatment bed. I was held down by several pairs of hands until the general anaesthetic took hold. There would be bruises afterwards on my arms and shoulders. One of the regular nurses wore a strong, sickly sweet perfume and five years later this smell is still a trigger for a panic attack. The nurse who ran the unit was a zealous ECT advocate and showed me a display book of before and after photos of former patients to convince me that this would be my miracle cure. To me the ‘after’ shots looked like ventriloquist dolls, their faces contorted into strained smiles. ‘Wouldn’t you like to be in our book?’ she asked is a voice not unlike that of a Kindergarten teacher talking to a four-year-old.
In this state, I somehow managed to talk 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 was completely ill-equipped to deal with her still 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, (no one told me not to drive) got into a minor car accident (that I evidently drove away from) and became even more manic. I spent days obsessively combing the newspapers and watching television for reports of a hit and run. Eventually, my daughter had no choice but to take me back to the hospital and continued to explain that this was highly unusual behaviour. She suggested that someone contact my GP of seven years in Port Lincoln, but this advice fell on deaf ears.
I continued to be heavily medicated and hypomanic and at this point was diagnosed with Borderline Personality Disorder. I’ve since learned that a diagnosis of BPD is quite a common thing in psychiatric hospitals when patients are ‘difficult’. Eventually, I was moved back to a locked ward and pumped full of antipsychotics. 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. 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 had made a promise to my daughter that I would stay alive, but suicide was a daily consideration. Fortunately, I lacked both the energy and focus. Every morning I would wake and make a deal with myself that I would stay around for just 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, I was unable to function in the world of work and will be forever grateful to a friend who gave me some part-time work cleaning his legal offices during this time. From here I eventually returned to study and bit by bit put my shattered mind and confidence back together. Another turning point was putting together my own treatment team. I found a committed GP with an interest in mental health, a highly experienced Psychiatrist who understood the public system and was able to 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 my medication and have essentially given me the confidence to live a full life again.
They are unanimous in their agreement that I never had BPD and that I was medicated far too heavily and with no reference to my previous psychiatric history. There are some that will say that ECT saved their life, but there is also a view that any benefit a patient receives from ECT is outweighed by the trauma of the treatment. For me it was a deeply traumatic experience and for a long time after 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 carefully chosen words and these women have played such an important role in my recovery.
Lately, I have come to 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 medical model of treatment is fully invested in tools like 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 may have prevented my situation from escalating as it did. It would also have made an enormous difference to the experience of my daughter. I am hopeful in 2019, that this might happen.
When I look back on this experience, I cannot recall one moment of human kindness from medical staff, during my eight weeks of hospitalisation. 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 are gone, or perhaps people just didn’t have time. In any case, what stays with me, is feeling alone, trapped and terrified. Likewise, my daughter remembers feeling alone, terrified and as though she had lost her mum down a rabbit hole. And worse still, for a long time she felt responsible. It has taken many years for her to accept that none of it was her fault and that she did her very best for me in a system that was fundamentally broken. Thankfully, she never doubted how much I loved her for dogged advocacy, support and wisdom beyond her years.
If we are to take a human rights approach to mental health care, we need to make kindness and connection the basic tenet of that care. Surely there can be no other starting point for the treatment of anyone with symptoms of mental distress? And also, for the loved ones supporting someone in distress. A system that further psychologically damages people in mental distress and their carers is a system that is beyond broken. What is the point of psychiatric care that keeps people ‘safe’ if people come away from treatment broken and with no hope for the future?
As I left Glenside, a Psychiatrist casually said to me, ‘you’ll be lucky if you ever work again’. It has taken a lot of determination not to live this ‘sentence’. Such is the miracle of recovery. And I consider myself one of the lucky ones; despite that 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 their basic human rights, the treatment of people with mental illness should never be a matter of luck.
That’s simply not good enough.
© Kristen Lawler, March 2019