Ben, a recovery tutor at SHSC writes about the stigma and isolation of a mental health diagnosis, the value of being an expert by experience and the need for a person centred approach to recovery.
- What brought you /how did you come into contact with mental health services?
Unfortunately my first few contacts with mental health services were a rather messy affair, in part due to my time being split between Sheffield and Kent, where my parents were living at the time. I had always been quite imaginative and sensitive as a child, and I had a tendency to drift off into fantasy realms in my head when things in day to day life were tough. I was very ill when I was young with consecutive infections that eventually led to pneumonia, so I had an early encounter with my own mortality that shook me up. My parents also moved about a lot, so there were teething problems in new schools to contend with and a constant need to make new friends until I was 11 or 12. These fantasy realms gradually evolved into a quite personal spiritual framework and experiences within this might be described as psychotic; one such example was feeling like I was levitating above the chair at my desk, lifted there by an invisible hand. However, as these weren’t distressing experiences I never thought of them as particularly worrying, and though I had a tendency to be sensitive and often found myself tearing up at situations, I never felt like that was because something was wrong with me. However, moving away from home for university, and from a quite bucolic countryside location into the city, overwhelmed me.
In the cut and thrust of the hectic student social life I felt I couldn’t be my eccentric self without being left behind, yet trying to fit in also made me unhappy. A relationship I had been in since I was 16 also came to an abrupt end, adding to my loneliness. I began to get more and more isolated and eventually became quite depressed and sought help from my GP who prescribed me Prozac. This had a desired effect of lifting my mood, but on returning to University after the Christmas break I wasn’t sleeping and felt elated. I spent all my student loan in weeks, buying expensive rounds of cocktails, flashy clothing, club tickets and drugs and going from a previously quiet and chaste young man into a rowdy and sexually disinhibited one. I made a lot of friends but also caused havoc with my behaviour. Eventually, after a fortnight in which I didn’t really sleep at all it all came crashing down, I was broke, shattered and didn’t really know who I was anymore. I tried to retreat into my imaginary world as I had done for resilience in the past, but that too had become harsh, and the sensation of blessing and oneness I had with the world turned to a feeling that I was evil and cursed. I became terrified, helpless and suicidal, and checked myself into A&E. I was seen briefly by the crisis team, and then I was withdrawn from University back to my parents. It was back there that I was first referred to a psychiatrist and thus had my first real contact with mental health services.
- What is/was your experience of mental health services?
My initial experience of mental health services was a strange sense of relief, as I’d imagine is common with a lot of people. I was at a horrendous dead end in terms of where to turn, and the contact with services initially seemed like it might be a way to make sense of what had happened to me. Receiving a diagnosis of Bipolar Disorder meant I could explain some of how I had behaved over the preceding 6 months to my parents, friends and course mates, and I didn’t hesitate to try and educate them about the condition, using leaflets I received from the Psychiatrist and a wealth of articles I downloaded off the internet. However, this backfired on me somewhat; I was innocent of the stigma surrounding a diagnosis such as this, but the more I explained my ‘illness’ to people the more wary they became of me. Initially I was offered nothing other than drug treatments either, which had little affect apart from making me put on weight so fast it put considerable strain on my heart and led to a couple of scary physical collapses. I was unable to participate in sports, which I used to really enjoy, and was gradually getting distanced from my friends.
This in turn fed a growing sense of paranoia that there was something seriously amiss with me. This sensation was rooted in truth but eventually ballooned, and again I believed that I was cursed and that I was responsible for a great deal of the evil in the world. My thoughts were out of my control, and images of the most horrific scenes of war, violence and torture would flood my mind every time I tried to relax. I locked myself away in my room so I had as little human contact as possible, yet the more I isolated myself, the more I was absorbed by this alternate reality, which was essentially a hellish version of the one I used to turn to for comfort. I was harassed by voices in corners of my room and beneath my pillowcase telling me how terrible a person I was, telling me that I was the antichrist and was destined to do evil. Eventually I resolved to destroy myself, collecting drugs, weapons and just about any method you can think of. Just in the nick of time, someone checked on my room for the first time in a long while and saw from the state of things that something was seriously wrong, and though what really happened in the following period is a bit blurry to me, I ended up in hospital.
This hospital admission probably saved my life, but it was also the lowest point of it. As I had no CPN or support worker assigned to me at the time I was initially just dropped outside the nursing station, terrified and disorientated. There was a lot of violence on the ward and I was at one point caught up in it and got attacked. All the interactions I had with staff seemed to be to do with assessing the risk I posed to myself and others, and seeing what happened to other patients on the ward who were more vocal about their strange beliefs made me close up completely to staff about my own. I felt very alone lost in these terrifying thoughts. However, in time, a combination of high doses of medication- which tempered the intensity of my thoughts- and the unquestioning kindness displayed by some of the staff meant that I did feel a little better, and though a significant fear that this was my life now persisted, I took steps towards leaving the ward. The best thing which happened to me at this point was being introduced to a fantastic CPN called Cathy, whose response to me no matter what state I was in was to treat me like a normal human being. Suddenly, instead of claustrophobic meeting rooms we were going on drives to eat pub lunch, or to watch her daughter’s music recitals. Most importantly, our conversations centred around getting to know each other, not my diagnosis. For the first time in a very long time I started to feel normal. She helped to support me through a lot of tough times over the next couple of years, including a stressful period when I went back to university and ended up getting hospitalised again, but having someone who knew me as a person and with whom I could collaborate on planning for the future- rather than having what my expectations should be dictated to me- made all the difference.
- (a) What aspects of your life were affected by contact with mental health services?
I seem to have described a lot of the negative impact that stigma due to contact had above on my relationships with peer groups at university, so I will avoid reiterating that to much, but I must say that even very sympathetic relationships were affected by it, including my parents. However there were some positives too. Once under the EIS, lots of things helped me to get my life back on track. This included employment and volunteering, activities, help with negotiating the benefits system and university systems and more.
(b) And how were they affected?
After leaving hospital I felt a deep sense of self imposed shame and was fairly isolated, in part my own doing. EIS used to run activity and sport groups and these were an excellent way to re-enter a world of socialising and get active in an environment that was very supportive, both in terms of staff and the group members themselves who had often come back from similar experiences and could be understanding as well as immensely inspiring. Having staff to support me in making job applications, sorting out benefits, volunteering opportunities and more was an important step. Later on, Cathy retired and was replaced by another fantastic CPN, Ian, who really helped me get the confidence to go back into academia, even managing to make me realise that a lot of the thought processes I had been told were symptomatic of my illness in the past were actually strengths I could draw on and maybe channel effectively in that area.
- What projects, or work, are you involved in today?
These days I keep myself very busy. Having had him as my CPN, Ian is now my colleague at the Recovery Education Unit in Sheffield and our team works to spread the word about Recovery based approaches. I utilise a combination of academic knowledge and my lived experience in the role, as I think there is an expertise that can only come about through experiencing things yourself. I also run music and poetry nights and write and play both myself, and occasionally get to travel to do this around the country.
- What is your proudest/main achievement?
I have just finished a Masters degree in literature with Distinction, which I am very proud of as I was certain a few years ago that this would be an impossible thing to do for me, but probably my proudest achievements are my music and poetry which have both been critically acclaimed. These are perhaps particularly sweet as I was once told by a psychiatrist in Kent that the belief that I was going to be a poet was delusional!
- Is there anyone in mental health you particularly admire?
There are some famous names in the world of mental health who really inspire me. I’ve always been fascinated by R. D. Laing and David Cooper, and more recently the work of Richard Bentall, Rachel Perkins and others who champion Recovery based approaches. However the people who most inspire me are the people I work with. There are so many people working in mental health with a huge and indefatigable desire to help, even despite the challenges of the current financial and political climate. People whose attitude to life and work buoy up my own reserves of hope every day.
- Is there anything else you’d like to say?
I think the most important lesson I have learned through my own experiences and through working in mental health is that we need to focus on what’s actually distressing someone having problems, rather than on a list of ‘symptoms’. I still regularly experience things that might be described by many as psychotic, yet I have come to realise that it was the stigma and isolation that came with relating these experiences to people that was the bulk of my problems, not the ‘symptoms’ themselves which I now find manageable. Having spoken to a lot of other people who have used services, this seems to be a common thread and I think it’s important to acknowledge.