This article is not about policy, budgets nor business. I want to talk about lived experience. I want to share one of my stories with you in the hope that we can work together and improve system outcomes for others.
• What is Bipolar disorder?
It talks through my mental health episode, from the onset of symptoms through to discharge from hospital, through states of depression, hypomania, mania and psychosis, transition between these states, the thought processes underlying them and their associated stigma. My aim is to give you an insight into what a mental health episode looks and feels like.
When living in London I was seeing a GP to renew my prescriptions as prescribed by my psychiatrist in Australia. I thought as long as I kept taking my medication I would be OK.
When I started to feel depressed I kept telling myself I had no reason to be depressed. I was living and working in London and every few months I would holiday in a different country. But depression crept in, each day I would feel depressed for an ever increasing amount of time.
I started to self-isolate. I stopped going out with friends and I hated myself for it. I didn’t plan on living abroad forever, I wanted to do and see as much as possible. I felt like a failure. I blamed myself for being lazy and for being a bad friend.
My interest and pleasure in everything diminished. I had no appetite and I slowly lost track of what I was eating and when. I kept forgetting to eat. I woke every morning with an overwhelming sense of dread. I felt alone and worthless.
I was having problems performing the admin part of my job as I couldn’t concentrate. I had to put on a happy-face for work. I was surrounded by people having fun and was meeting new and interesting people from all over the world. I was drinking too much alcohol and behind the scenes I was falling apart.
I was waking up depressed. Every morning I woke up with brain fog. It felt like life was happening around me and I was just playing a part like a puppet. Everything was monotone. I felt completely disconnected from life, just walking around, going through the motions.
And then hypomania started to creep in. I woke up depressed, but by late afternoon I was hypomanic. Over the course of the day I became motivated and full of adrenalin. I’d happily go about my routine. I started socializing again and interacting with my friends.
My daily state of depression was coming on less and less and I felt like I was getting better. My hypomanic symptoms were easy to hide and went relatively unnoticed, even to myself. When hypomanic I was more talkative, productive, outgoing and friendly. It helped me to be successful in my job.
But just as the hypomania crept in, so too did mania. I had been manic before so I felt I knew my limits. This time my mania came with only a few grandiose ideas which, from experience, were easy to dismiss. I was experiencing a kind of reality-based mania. I still had grandiose thoughts but I was able to stay in touch with reality. I told myself I wouldn’t go manic as long as I kept taking my medication, and I told myself I could control it.
The less sleep I had, the less I needed. I was unable to concentrate on doing only one thing at a time. I had to keep checking my phone to remember what day it was. I lost the ability to distinguish night from day and my circadian clock became completely dysfunctional.
I became more and more scared each day that maybe I couldn’t control this, and I didn’t want to go through a lengthy hospital admission as I had been through before. I needed early episode intervention.
I went to the A&E (emergency room). I’d previously been to this same emergency department for a matter not related to my mental health. My details and entitlement to healthcare under the NHS was already established. I explained my history of bipolar disorder and told the nurse I was in the throes of a manic episode. I begged them to give me something to help me sleep.
The nurse suggested an ECG and asked me to wait. People in the waiting room moved away from me. I felt humiliated and embarrassed. I had gone there for help. I needed urgent medical help. The stigma was so bad, and my judgment so impaired, I went back out onto the streets in the middle of the night.
I spent hours on the tube trying to get to a friend’s place despite it being two blocks over from the A&E. I’ve never been so mentally exhausted as I was that night. So many tube stations, so many platforms all with multiple exits — it felt like I was stuck in a maze and I was becoming increasingly desperate. Even though time had become irrelevant, I knew eventually the trains would stop running for the night. I was caught in a maze and my brain was in a race with itself.
One moment I’d know exactly what I was doing. I was using a tube map to get to a chosen station, and the next I’d just be standing there on the platform wondering why I was holding a piece of paper, and trying to work out where I was and what I was doing.
I had a constant battle in my mind trying to work out what was real and what was not. Everything started to connect, the platform lift doors opened just as the train arrived, the escalators sped up and slowed down in line with my racing mind. I felt truly alive and connected to the world, like I was seeing it for the first time, and it was magnificent.
To cope with this I created an imaginary world in my mind, a world that validated my emotions and behavior. I started to believe someone was communicating and controlling me and watching me on cameras to see how I reacted to their commands. I started to have auditory hallucinations. One moment I would hear someone whispering in my ear and the next I would hear someone shouting at me from the end of the platform.
There was a constant white noise in the background and what sounded like a radio playing softly. Sometimes the white noise was so loud I couldn’t hear the trains go past. I started to lose my peripheral vision, balance and co-ordination. Twice I tripped on the stairs. If I turned my head too quickly it felt like I was falling.
I hadn’t eaten or slept for days, but I couldn’t stop until I was somewhere safe. It was like my mind and body were separate. My mind was racing a million miles an hour but my body was screaming to stop as I was completely exhausted.
This is when I slipped into psychosis. The onset was rapid. My memory started to break down. I started losing control and the ability to take on information and use it to make decisions.
My perceptual processing and structural brain networks integrating emotion and cognitive control were going haywire. My cognitive skills were fading and I was consistently unable to remember where I was and what I was doing, no matter how hard I tried.
This was the point of no return. I knew then no matter what I did, or how much psychotropic medication I was given, it couldn’t stop me from developing full blown psychosis. I was in too deep and there was no way out. The best I could hope for was urgent medical help to keep me safe and lessen the severity of my episode.
I finally found my friend’s flat. Bethany took me back to the A&E. I hadn’t told my friends about my mental illness, but I was able to explain enough in between my detached psychotic thoughts. I have clear snapshots of memory of the admission process, but I can’t fully remember which memory precedes the other.
I remember being placed in a locked room with cameras, which only exacerbated my already delusional thoughts. My next memory is of lying in the back of an ambulance being given a needle.
I woke up in a small room with bars on the window. For a moment I wondered if I was in hospital or in prison. I was petrified to leave the room in case I had done something really bad while in my psychotic state. My strange grandiose thoughts persisted. Initially I thought someone might still be watching and controlling me. One minute I was in touch with reality, and the next I’d believe in the alternate world I created for myself in my mind.
I kept my strange thoughts to myself; I told no one about my secret thoughts of control. But it was clear from my behavior that I was not in touch with reality and I was placed under a treatment order.
I was in a foreign country, in a psychiatric hospital under a treatment order, with no understanding the of the country’s mental health system. I wish I had the words to describe to you how this felt, but I don’t. Instead I will read some lyrics of a song written by Halsey in which I found commonality.
They send me away to find them a fortune a chest filled with diamonds and gold
The house was awake with shadows and monsters the hallways they echoed and groaned
I sat alone in bed til the morning I’m crying they’re coming for me
And I tried to hold these secrets inside me
My minds like a deadly disease
I paced around for hours on empty I jumped at the slightest of sounds
And I couldn’t stand the person inside me I turned all the mirrors around
I’m bigger than my body
I’m bigger than this home
I’m meaner than my demons
I’m bigger than these bones
And all the kids cried out please stop you’re scaring me
I can’t help this awful energy
Goddam right you should be scared of me
Who is in Control?
I was finally receiving medical treatment, but my ordeal wasn’t over. I still had to endure, and recover, from psychosis.
Again I have clear snapshots of memory of the next two weeks of my full-blown psychosis, and after a few weeks of a psychotic episode I started to remember more and more about the experience.
I also know of my behavior from my discharge summary. To read about my behavior during psychosis is quite confronting. Discharge summaries need to be written with great empathy and care and contain safe-language in order to allow people to maintain a sense of dignity.
My cognitive skills had broken down and I had to rebuild them step-by-step using everyday challenges from the real world. It started with my memory, I started to remember what little daily routine I had and to follow it again the next day. Then my attention span increased, my friends brought me books and I tried to read again.
My perception of my surroundings started to align with reality. I was able to process external stimuli and my logic and reasoning skills returned.
I talked to myself out loud. I imagined situations in the real world and rehearsed conversations, trying to prepare myself for discharge. My strange thoughts slowly disappeared and I started to become aware of my surroundings. I developed clinical and situational depression.
Anxiety set in; I couldn’t sit still and my heart was racing. My life had fallen apart and I had to learn all over again how to feel and act in the world outside a psychiatric hospital.
The release date of the treatment order was getting closer. I was allowed leave and my friends came to take me out. The outside world was terrifying and so fast paced.
I realize now just how much danger I was in that night. I was wandering around on train platforms with little balance and I walked through parts of London I would normally avoid. But it didn’t need to be this way. If I had not been stigmatized at the hospital I would have stayed, been kept safe and on the road to recovery.
When I recovered from my episode I joined my local NHS Foundation Trust and shared my experience in the hope that what happened to me, doesn’t happen to anyone else.
I’m not here to denigrate the NHS. Considering their funding and the number of service users, there are bound to be flaws in their procedures. And healthcare is subject to human error; not everyone is perfect all of the time. What’s important is they continue to work towards improving their services, which is evident from the introduction of the Safe Haven Cafes UK, on which I’m pleased to see QLD’s Crisis Support Spaces modeled on.
I am pleased to see us reaching out to other countries to share expertise in mental health care. Providing affordable and quality mental health care is a challenge for many countries and we need to encourage and listen to people with a lived experience.
Getty image by agsandrew