All too often as a health researcher, commissioner, or policy-maker, one can get bogged down in the statistics, methodology, or terminology; in turn, forgetting the human stories that lie behind it all and, ultimately, giving any research on human beings its meaning. It was at one such point,when I was busy stressing about how to best define each of my research questions, that David* reached out to me via email. At the time, David* had been looking online for accessible and recognisable accounts of his own diagnosis (schizophrenia with co-morbid substance misuse, a.k.a ‘dual diagnosis’) but was failing to find anything so, after finding my plea for help with this blog (which aims to tell the stories of those with lived experience), instead offered his own experiences in an effort to help improve others’ understanding.
It is my hope that, by telling David*’s story that other researchers, policy-makers, healthcare professionals, and the likes, will remember that each and every person with any particular diagnosis is very much an individual; and, more importantly, that their story matters. To that end, here is David’s.
A former University-scholarship student, David* is in his 40s and has been unemployed for over a decade now. He has been taking daily anti-psychotics for paranoid schizophrenia ever since he was sectioned, for the second time, in his early twenties and now also identifies as an addict; predominantly misusing both cannabis and alcohol. For most of his life, David* has wrestled with intense and recurrent suicidal thoughts and feelings; something which he has felt since long before his substance misuse began. Despite this, David* does innately believe that things can and will get better, and hopes for many of the things that you or I might want out of life: to live independently; to find some kind of fulfilling employment; and, to find a partner.
Mental health aside, David* enjoys both music and art; both of which he finds extremely positive for his general wellbeing. He hopes, in the future, that he might be able to get away on holiday again, as he ‘sorely needs a break’ from the small town he lives in; and, one day, that he might also be able to write a book. Though David* worries that the opportunity to realise this latter dream may already have passed, my impression is that it would be a crying shame were he not able to en such a tome; given the intelligence, the insight, and the eloquence with which he writes. For this reason, I feel extremely honoured that David* first reached out to me at all, and that I am now able to write up just some of his thoughts and experiences for this blog. I realise that this piece is somewhat of a long read, but it is also an important one. I certainly hope you find it as interesting as I do.
MentalAcademic: Hi David*, thanks so much for agreeing to be interviewed about your experiences as someone with lived experience of schizophrenia and substance misuse issues, as well as suicidal thoughts and feelings. Could you tell us a little bit about how you think your mental health, substance misuse and suicidality relate to one another? Moreover. what do you think are the key contributors to and/or causes of your suicidal feelings?
Quite frankly, in my case, I think that the combination of nightly-drinking and cannabis use, in addition to the effects of my diagnosis, most likely work together to hold me back in life; which, in turn has a detrimental effect on my self-esteem and increases my suicidal feelings. That said, I have never actually given up cannabis for more than a few weeks at a time, and have experienced suicidal feelings since my teenage years; long before I started drinking, so it is difficult to say definitively how the substance use and suicidality relate to one another. I suppose it might have been my rather obsessive nature which led me to take a rather doom-laden view of the world; rather than the substance misuse itself. At that time, my main preoccupations were with my appearance and the opposite sex, which I suppose makes me not much different to most others my age at that particular time of my life. Regardless, I feel my perspective was a bit more negative than it otherwise should have been: I believed I was old by just the age of 16.
With regards to my mental health, although I had experienced some delusional symptoms in my teenage years, it wasn’t until I got to university that full-on ‘Truman Show-style’ symptoms began to appear; which I found hellish. It was then, when I got sectioned for the second time, that I resolved to take the anti-psychotic medication I had been prescribed. This medication does help with my delusions, although it comes with a lot of uncomfortable side-effects (e.g. weight gain) that I find difficult to deal with. It wasn’t until after my diagnosis that my cannabis use really began; that was almost 20 years ago now, and I find it difficult to be without it today. Admittedly, I had smoked the stuff a couple of times during my teenage years; however, I do not believe that this use contributed to my later psychosis, although my use today certainly makes my paranoia worse. Nevertheless, I do not believe that stopping smoking would significantly ameliorate my psychosis, or help much with the lack of motivation I experience as a result of some of my delusions/paranoia (e.g. believing that I am being watched 24/7), so I do not see my cannabis use as the root of all my problems.
In terms of my suicidality, it was this extended period of psychosis, negative mood and general lack of motivation – alongside the ‘brain fog’ I experience as a result of taking anti-psychotic medication – that has led me to ultimately believe that I could not ‘fit in’ with ‘normal’ life. Crucially, it is this feeling; that I am not suited to life in the way that everyone else is, that causes me, frequently. to think that life is hopeless and suicide is an option. The fact that I am also regularly broke and could not move out of my parents’ home until later on than I would have liked does not help in this regard, especially since I have a fairly difficult relationship with several members of my family. I often fantasise about never talking to any of them again: Unfortunately, however, I am already extremely isolated, with only one good friend to really talk to, so feel as if this disconnection is not possible. Add on top of that the fact that I get little support from the NHS (I believe austerity under the Tory party plays its part here); all of which leads to further feelings of suicidality.
MentalAcademic:Â You talk of not being able to ‘fit in’ with normal life: Would you say that you have felt this way for a long time and that this feeling – of being ‘other’ – contributes to your feelings of suicidality?
To be honest, this feeling has been something I have experienced since I was around 14-15 years old; since before I received my schizophrenia diagnosis. It definitely contributes to my suicidal feelings. These days, I often feel very out of place in a small town full of small-minded people, who are mostly retired pensioners or young families. My personal tastes and interests do not match others’ around here, and my ‘lefty’ political views don’t fit in with the general consensus. Despite this discomfort, I lack the drive to move; especially since my parents, who are already under a lot of stress due to ongoing issues with certain members of my family, would insist on being involved in such a venture. In hope of a little reprieve from my isolation, I’ve tried social media a little over the years but find it distressing. I suppose I’m a little shy and a lot awkward in general; something I have felt for a very long time. I was a high-achiever in school, but my academic success did not translate to other areas: I didn’t really have any friends in school. I fear this fact probably explains a lot.
MentalAcademic: That sounds really difficult – struggling to find people you can relate to nearby and during your teenage years can have a significant impact on a person, even into their adult years. I am sorry to hear that you have struggled in that regard. I am wondering whether there are any positive or protective factors in your life which help alleviate your symptoms of distress/suicidality? What helps you to maintain a positive outlook, and believe that things can and will improve?
Medication helps. It has increased in the last couple of the years; the result being that I’m somewhat detached and just don’t seem to care as much as I perhaps should, but the detachment helps keep me going in this small town, without many meaningful interactions to speak of. Other things which I try to do more of include reading novels, and seeking out interesting music. I also try to be as ‘good’ a person as possible and avoid hanging around in my pyjamas all day, which is not conducive to my wellbeing. When I was younger, I was gifted academically and so groomed to expect that I’d go on to be a big success. That feeling has lasted, meaning that; despite being 40 years old and unemployed, I still can’t help believing that I’ll write a popular novel or something like that. I know such an inability to “get real” could be seen as ridiculous or childish, but these sorts of beliefs help keep me going when things get tough. In a sense, I feel like I’m still 17 with a lot to look forward to.
I am also quite fortunate that my parents are quite wealthy and have always offered me support in certain ways. I suspect that, in other circumstances, someone like me could have ended up in sheltered accommodation, or even homeless; which is, of course, distressing. I’ve also had a few good friends over the years and believe that friendship is enormously positive for my mental health. Unfortunately, I currently only have one good friend and it frustrates me that we don’t talk as much these days. Getting older, you find that people fall out, move away, or get married and have kids. All of those factors have contributed to my current isolation. I tend to also avoid certain family members, due to issues which would be detrimental to my mental health were I to confront them. Unfortunately, this avoidance only further perpetuates the isolation I feel. Truthfully, I really wish I could bear to be back on social media, since that’s how most people seem to communicate these days.
MentalAcademic: That’s all really interesting – you clearly have a lot of insight into what factors you find helpful and harmful in terms of your mental health. Earlier you spoke about self-identifying as an addict, and regularly using substances such as cannabis and alcohol. I’m curious as to why you think you use these substances? What benefits and drawbacks do you think your substance use has; in particular, for your mental health and suicidality?
In terms of my substance use, I pretty much only use cannabis; although I do drink too much as well. With regards to the alcohol, I drink for the same reasons as anyone else: to escape; to relax in the evenings; and, of course, for social reasons. The cannabis is an unusual one because, while it is often relaxing, I know it also increases symptoms of paranoia and probably works against my anti-psychotic medication. Consequently, it is far from the perfect ‘high’ but if I try to go a day without it I get intense cravings. A week without cannabis leads to intense feelings of anger and aggression; meaning that, in the past, I have stooped as low as collecting nub-ends from under park benches to get high in such situations. I think that using cannabis probably does increase my suicidality for me but, then again, I’ve never given up properly for any length of time to know for sure. I do think cannabis holds me back a lot more in life than the alcohol.
MentalAcademic: As someone with lived experience, what do you think can be done better for people who identify as having a serious mental health issue and an addiction problem, who may also be at risk of suicide? Are there any ways that practice could be improved to help these individuals, especially when they may be at crisis point?
For one, less stigma around addiction would mean that patients could talk about their substance use more openly. As it currently stands, I think most people lie about their vices without thinking, due to the stigma associated with addiction issues. In terms of helping people who may be at crisis point, I’m not really sure what to suggest; since my last one was in ended almost 20 years ago by medication and, despite thinking about suicide a lot, I’ve never actually attempted it.
MentalAcademic: What do you think are the main barriers to people with lived experience entering mental health/suicide research as participants? Do you have any thoughts on how accessibility could be improved?
In terms of research, I don’t really know what to suggest, as I’m not familiar with it. I suppose there will always be a reluctance by patients to discuss suicidal feelings with any kind of mental health professional, for fear of being sectioned. The laws around sectioning people are very controversial, for many reasons, but the one that applies here most is that the Mental Health Act needs revising to allow people to talk more openly about their feelings, by removing their anxiety about being detained. That said, since I do believe that being sectioned when I was going through my psychotic episode almost two decades ago probably saved my life, I can see two sides to the debate with regards to the Mental Health Act. This leads to us to a bit of a conundrum. Ideally, suicidal people would have access to a range of therapies and support, without the fear of detention, whilst also being offered alternative, therapeutic, living situations if their current one is stressful and detrimental to their current wellbeing. This would solve a lot of the problems surrounding freedom to talk openly and honestly about one’s feelings.
MentalAcademic: Finally, what are you hopes for the future? Do you have any thoughts on where research/health policy needs to go? Do you have any personal causes or campaigns that you are especially passionate about?
I suppose I have hope: I do innately feel, for some reason, that things will get better. One option is for me to confess my addictions to my parents and enter rehab, for all the good, or bad, that might do. I would also like to write a book. However, now I’m in my 40s having never started one, that idea seems slightly ridiculous. I would like a relationship, yet that dream is also starting to feel rather hopeless. Finally, I would also like some kind of employment that I actually enjoy.
With regards to my hopes for the country more generally, health policy needs to improve by first ending austerity, which has been disastrous for the country all round. The NHS is currently at crisis point due to a combination of under-funding, corruption, and greedy PFI (Private Finance Initiative) contracts dating back to the ’80s, that mean we’ve paid far too much for the services we’ve received, whilst certain beneficiaries get richer and richer. How we go about fixing all this, I’m not sure, but I don’t think that the NHS can survive in its current form for very much longer. It’s time that something drastic was done to save it.
Reclaiming Madness 