Inspired by the TV programme 'Psychosis and me,' I've been thinking about my own mental health. As someone who lives with psychosis, I want to share some of my experiences, mostly so that I can better understand myself, but if it helps anyone else too, then that would be wonderful.
I suppose the first thing I want to say is that with the benefit of hindsight, I've probably had what you might call 'symptoms' for much of my life. I first started hearing things that other people didn't as a child. I regularly heard my own thoughts as I was thinking them. I believed that everybody else had the same experience, so it was a shock when I learned that this wasn't the case. Sometimes I also heard other voices. Only occasionally, but it didn't particularly upset or concern me because it wasn't hugely different from hearing my own thoughts. That and because the voices weren't saying anything that worried me. Sometimes I heard my teachers' voices, those of my parents and sometimes complete strangers.
Fast forward to age 18 when I was at university and away from home for the first time. Seemingly out of the blue, I started believing that I was soon going to die. This thinking completely permeated my everyday life and I became obsessed with the idea that I would not reach my 19th birthday. In my mind, this wasn't debatable, it was reality and my death was imminent. Soon, the voices began to repeat the kind of anxieties I had around dying.
All this started around March and as my birthday is at the end of May, I had about two months in which to live. I was terrified. Understandably, this led to anxiety and I began having heart palpitations and chest pain. Not unreasonably, this fed into my fear that my time was almost up. I was so utterly convinced that my death was imminent that I made a will. The voices continued.
I didn't share this with anyone else, not even my closest friends or family. Looking back, I can now see that I'd been under immense stress, with leaving home, planning a trip to Germany as part of my course (my first trip abroad), constant money worries and concerns about my future as I wasn't enjoying my course. I vaguely considered visiting a university counsellor, but I talked myself out of it on the grounds that counselling was for people with 'real problems.' This is a recurring theme throughout my younger life, not believing that my problems were serious enough to warrant attention.
As my birthday approached, not to mention exams, I became increasingly fearful and stressed. I explained away my erratic behaviour to others as exam stress, but luckily for me, contact with my family was fairly limited and my closest friend had already finished her course and gone home for the summer, so there was really nobody to tell.
I've always been a very private person, some might even say secretive. I've always 'kept it all in' as I don't like to be discussed, worried about or in actual fact to receive sympathy. It's only in fairly recent years that I've felt more comfortable sharing private things about myself and my inner world.
Anyway, back to being aged 18 and worried sick that I was going to die. I stopped eating through anxiety. I lost a lot of weight and my nails were practically non existent. I started nervously picking at my scalp and it was soon full of open sores. As my birthday approached, I went to sleep every night believing it could be my last. Eventually my birthday arrived and to my absolute amazement, I was still alive. Far from this being a cause to celebrate, I was completely exhausted. Gradually, having passed my birthday, I began to challenge the certainty that I was soon going to die. I reckoned that if I hadn't died by weekend, the chances were I'd still be alive by the following weekend. Over a period of weeks, this worked and eventually my beliefs about death began to subside.
My early to mid twenties are something of a blur to me now. I remember lots of alcohol, some drugs, unsuitable relationships and a great many relocations and house moves. Not exactly conducive to good mental health. I have to confess that I don't have a lot of memories of this time in my life. I know that I was often profoundly unhappy, but I also had periods of elation and great energy. During these times, I was extraordinarily productive and effective. Then I would go into hibernation for a few months, as though recovering from my active stage. I was first treated for depression aged 21 and was prescribed medication for the first time. I took it for a while, it helped and I slowly began to feel better. Then I moved house, changed doctors and never refilled my prescription. I was not to seek help again for my mental health for many years.
In 1999, I met my husband, James. The next few years were a period of relatively good mental health. We were planning a wedding and a long honeymoon (we were quitting our jobs and doing a round the world trip). We had a lovely wedding and the planning was relatively stress free. We left the UK for 9 months of travelling and I felt happy and surprisingly free of stress. With the benefit of hindsight, I can now see that stress and lack of sleep are both major contributors to poor mental health for me.
We returned home in May 2003 with a baby on the way, no money and no jobs. It wasn't easy, but we both found temporary jobs. I also started a part time degree in psychology at Leeds University. Joseph was born just before Christmas, December 2003. His was a long and difficult arrival into the world and I felt completely spaced out for days after he was born. I assumed this was thanks to the drugs I'd been given, but the feeling of unreality continued. As did, unsurprisingly with a new baby, lack of sleep. I began to hallucinate. I was seeing horrific images of babies and children being harmed and killed. The hallucinations were extremely strong, they appeared right in front of me and seemed completely real. Once again, I kept all this to myself as I feared Joseph would be taken away from me if I spoke out about it. I began to believe that I was seeing these things as a warning - that as long as I received the messages, my child would come to no harm in real life. I found this comforting and it allowed me to cope with the terrible and frightening images. Gradually they began to fade, but looking back, I was far from well. As a new Mum I also experienced depression, lack of motivation, feelings of anxiety about my competence as a parent and suicidal thoughts. I didn't ask for help because I didn't believe my symptoms were 'bad enough.' Somehow I managed the demands of a part time degree alongside new motherhood. To this day I don't know how I managed it, but I did.
After moving house, I soon found I was pregnant again. The pregnancy was relatively straightforward, as was the birth, but not long after Evan was born in December 2005, I began to feel paranoid. I became obsessed with the idea that I was 'on show,' that people could reach into my mind and see my thoughts. I believed that we were being watched. I talked James into putting up thick curtains to act as a shield from prying eyes. I spent a lot of time worrying about being seen and often felt invisible, or see through. I struggled alone with these problems and once again didn't seek any help.
In August 2005, we moved house again. One of the primary reasons for our move was my discomfort and difficulty in living in a house where I felt so visible. The layout of the new house afforded greater privacy, which was one of my 'must haves.' During this period, I volunteered and then worked part time for a charity. I was still studying part time and had two small children. Despite all this, my mental health remained somewhat stable for a while.
Then I started worrying about my marriage. I don't know what sparked off these concerns. Maybe it was the strain of having a young family and little money. I had no evidence for this, but I became convinced that James no longer loved me. I couldn't put my finger on the exact nature of the problem, things just felt 'wrong' between us. I tried talking to James about it, but understandably he didn't know what the problem was because as far as he was concerned, his feelings hadn't changed. The voices told me that my suspicions were correct and that my marriage was in serious trouble. It wasn't a happy time for either of us. Looking back, I know that my mental health situation made a huge contribution to both of our feelings of unhappiness and my paranoia that things were 'going wrong.' The voices continued and I felt persecuted. Somehow I completed my exams and dissertation at the end of my degree. Nevertheless, I felt very unwell. I wasn't depressed, but my problems caused low mood. I considered getting medical help but realised I didn't know what to say.
I struggled through the next few years. I had periods of feeling relatively ok though, so I worked extremely hard during those periods, which allowed me to ease off when things were more difficult. I graduated with a good degree, I'd already begun training as a counsellor and I did some part time work around the children's school day. Still I felt paranoid and simultaneously highly visible yet somehow invisible. The voices appeared, on and off. Sometimes they would trouble me and sometimes they would be neutral and just comment on what I was doing.
In 2012, a routine health problem for Evan led to investigations that would ultimately lead to the boys' diagnosis of Alport Syndrome. By this time I had begun a full time, funded PhD at Leeds University. Doing a PhD was the culmination of many years of academic work, my counselling training and experience in family support. Professionally, I was absolutely in my element. I passed my transfer at the end of year 1 with no corrections and was delighted. Meanwhile, the health investigations continued and my stress levels began to rise. At the same time, the demands of my PhD and life in academia became greater. In March 2013, Joseph had a biopsy and Alport Syndrome was confirmed. At the same time, I was starting teaching at the university and my research study was about to go live. I felt under immense pressure. My mood was low and the voices had begun to speak negatively about me. The voices continued to torment me and the pressure of my PhD was relentless. I saw my GP and took time away from my research, the official reason being 'stress.'
I have no clear recollection of the next few weeks and months. They passed in a haze of depression, voice hearing, vivid hallucinations and intense suicidal feelings. I was having a breakdown. I found myself in front of a psychiatrist. She was kind, she listened and then prescribed anti psychotic medication, anti depressants and medication for anxiety. She agreed to write a report for university, to request a longer period of suspension of my studies. This was granted. Unfortunately I never returned.
The next year was difficult. I fought an often losing battle to remain mentally stable. That Christmas we went away, but I spent most of the week in one room because it was the only place where I felt safe. I spent two weeks in hospital in the January and then went home to continue on the path to a recovery of sorts.
Months passed. The following summer, I began hearing voices telling me to take all my medication at once. I was filled with the conviction that this was the right thing to do. I was busy taking an overdose when James walked in. He asked me what I was doing and apparently I spoke calmly, telling him that I needed to take all my tablets in order to 'get well.' Immediately he took me to A&E, where I was checked out physically and eventually seen by a psychiatrist. They recommended I be seen by a team who could look after me at home.
A few weeks later, the voices began chanting and insulting me. They told me that the only way to be free of the voices was to die. They instructed me once again to take an overdose, which I did. Once again I ended up in A&E, this time being made to drink activated charcoal mixture and once again waiting to see the psychiatrist. I answered questions and in my mind I was totally lucid, but evidently this wasn't the case. The psychiatrist told me there were no hospital beds in my area, so I was discharged home under the home treatment team. I had daily visits from the team, who quickly concluded that I really needed to be in hospital. There were no beds in my area, so the search was on to find me a bed anywhere. Birmingham was mentioned. Eventually, a bed was found in a hospital around an hour's drive from home and I agreed to be admitted.
Later that day, we drove to the hospital. I remember an endless succession of doctors and nurses asking me questions. I was on 15 minute observations, so every 15 mins a member of staff would come and see me. Including through the night. There was very little privacy. I don't remember much about my stay in hospital, other than to say I met some lovely fellow patients. I was an in patient for three weeks, discharged at my request (too early, in retrospect) just in time for my husband's 40th birthday celebrations. The weekend was a big success, apparently. I remember very little of it as I struggled to be around people and spent much of the time alone in my room.
I had left hospital with a diagnosis of Bipolar Disorder, type 2 and another tweak to my medication. This time I was on the maximum permissible dose of antipsychotic. Back home, along with my care coordinator, I made plans first for my days and then for my weeks. Every day I forced myself to go out (even when I didn't want to), forced myself to have some interaction with other people and to do some household tasks. It was hell. The voices made living a 'normal' Iife almost impossible, but gradually, over time, they receded into the background, my delusions melted away and I felt more able to live my life.
This has been the pattern for the last five years. I am stabilised, feel relatively well and can function (at least up to a point) and then I hit a bump in the road. One of these 'bumps' was when I began to believe that I was a host to parasitic worms, which were living in my stomach. I wanted to borrow James' drill so that I could drill into my body and get them out. Another spell in hospital followed, then being under the home treatment team. Then, after a while, my symptoms eased off and I felt more able to live.
Sometimes my periods of relative wellness last for months and I try to get back to living a 'normal' life. In 2017, I started a doctorate course at a university an hour and a half away. I enjoyed the studying immensely, but travelling and being away from home was incredibly stressful and began making me unwell again, so I had to withdraw. 2018 was another year of ups and downs. I veered between paranoia, delusions and voices and relative stability. Stability for me does not mean that I'm symptom free, but that I can manage despite them.
I now live while managing my mental health. It doesn't rule my life, but it does affect the quality of it and to deny that would be ridiculous. The last five years has been an immense learning experience for me. I now accept that I have, in the words of my care coordinator, a 'severe and enduring' mental health problem. My diagnosis was eventually changed to that of schizoaffective disorder because the pattern of psychosis both with and without mood problems seemed to fit.
I take anti psychotic medication, anti depressants and medication for anxiety. Most of the time, my voices are in the background and I find I can screen them out. Occasionally I am troubled by delusions - there's a recurrent theme of being transparent, people being able to read my thoughts (and steal them out of my head). This in turn creates paranoia and anxiety. I have developed ways of managing these thoughts and beliefs. Sometimes these techniques work and sometimes they don't. Some days, I can barely function. Other days, most people would never guess that I'm ill.
I now recognise that it takes periods of stress for my symptoms to become exaggerated and too difficult to live with. I'll probably never be 'well' in the sense of being symptom free, but that doesn't mean I have to give up on life altogether. My goal is to live as well as I can. On days when my mood is low, I can feel as though I've failed in most areas of my life. This isn't true, of course. What happened is simply that I became unwell and had to make a change of direction. I'm still learning.
I can't finish this piece on an artificially high note. I'm still unwell. I still can't work or study. Sometimes I can just about manage day to day life, whereas at other times I can't. The important thing is that I'm still here, doing the best I can. I'm fortunate because I have a supportive husband, fairly understanding teenage children and a wider network of family and friends who support me. I don't have any particular words of wisdom for others with mental health difficulties, but I would express my solidarity, because it's not easy.
Go well, my friends.
