Beyond the research question: Understanding schizophrenia, substance misuse and suicidality from lived experience

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: 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.

*All names and identifying information have been changed, in order to protect anonymity. Interview responses are not transcribed verbatim, but have been checked by the interviewee for accuracy.

Living with chronic illness, mental health issues, and doing a PhD: An interview with the awe-inspiring Felicity McKee

My first interview is with Felicity McKee; PhD student, founder of a charity for the disabled/chronically ill, and mental health/disability advocate, all at the tender age of just 27. As the first demonstration of her strength and determinations, Felicity completes this interview virtually from her hospital bed; something that is, unfortunately, a seemingly regular part of life for someone with a chronic, but invisible, illness. The hospital visit does not hold her back. In fact, it almost seems to spur her on, All of this means that she is someone who has already commanded my full attention and admiration, long before the interview has even begun. This is clearly a woman to watch, who has much to offer the research, practice and policy communities. I hope you find her candid answers below as thought-provoking as did I.

1) Hi Felicity, thanks for agreeing to be interviewed! Let’s start by you telling us a little bit about yourself – who you are, what you do, and what’s important to you?

Well, I’m Felicity! I’m a PhD candidate looking at disability studies with a historic and literary gaze at Swansea University. I’m also the co-founder of Chronically Fabulous, an organisation that gives pamper sessions and makeovers (along with a professional photo-shoots) to people with a chronic illnesses and/or disabilities, as well as their carers. We’ve also recently branched out into sending out pamper packages.

Outside work/study, my main interests are Science Fiction. This has led me to becoming a lieutenant in the USS Caroline, a branch of Starfleet International (the largest and oldest Star Trek Fan Association in the world), based in Belfast: I’m the ships counsellor. When i’m not getting my geek on, I’m a keen activist for disability rights, mental health awareness and improved services. I’m also a feminist and focused on achieving safe, free and legal abortion for women in Northern Ireland, where it’s still illegal. At present, those women who do want an abortion have to travel, yet this is not something that is financially viable for everyone. Shockingly, women are still being brought to court for taking or seeking out abortion pills in Northern Ireland itself; In fact, if a person admits to having taken such pills to a health professional, that professional has to report them. This reality means that abortion in Northern Ireland is systematically pushed deeper into the shadows, and prevents women from accessing basic healthcare.

2) You identify as a researcher with experience of mental health problems and disability, who also conducts research in these two areas. What challenges does this dual-identity present, in terms of how you conduct your research? What advantages do you think it brings?

That’s an interesting question… and one I’ve pondered quite a lot! At times, when engaging in interviews with people with similar experiences,  I think one can feel more comfortable being open without the fear of stigma – so I suppose that could be one advantage. At the same time, however, it can mean my own thoughts, feelings and views on the illness can colour the research I’m conducting, so maintaining objectivity during the process is very important. To this end, I’ve tried keeping a reflective diary since I began my journey into academia, so that I can take time to really reflect on the interview or participant observation I’ve engaged in, and how my own views might have shaped that. Preferably, I’ll do this when I am no longer in the environment in which the contact occurred, so that I can get some space from the process and reflect more fully. That said, it can be really difficult at times, as certain areas of illness can resonate so deeply with you that your own experiences are going to come into it to some extent, even when you are trying your best to be an objective observer.

Historically, in anthropology, most research was conducted from a male perspective; specifically, a white male perspective, so they didn’t always see what occurred in women-only spaces. Male anthropologists were only really accessing the public sphere of women’s lives, not the private; and, if they thought they had accessed the private sphere, it was usually only via the male gaze of the participants they met on fieldwork excursions. In this way, as a person with lived experience, and as a woman, I feel I can access those private spheres more fluidly than others can. I think this has to be the main advantage of conducting research in sensitive areas, such as mental health and disability, as someone with lived experience themselves.

3) Managing a chronic illness is obviously challenging no matter what you do, but academia (especially PhD study) is known for being no easy ride. How do you manage both, without it having an adverse effect on either? What do you do to stay well emotionally, physically and spiritually or intellectually? 

Staying well? Hmm, that’s a tough one! I tend to have regular hospital admissions, so I have a ‘go-bag’ pre-packed, with space for my laptop and some books from university. It means I have to have good healthcare in place, with staff who are supportive. Recently, this has meant having blood samples taken 3 times a week, whilst simultaneously juggling university and the odd weekly admission overnight, or for a couple of days. Fortunately, my Masters degree was on the same site as the hospital, so I could go to class, stay in hospital overnight, and then return to class the very next day!

When it comes to managing a PhD with a chronic illness, liaising with disability services is a must. Never let someone make you feel you are not fit enough to do research because of illness or disability! When I completed my undergraduate Anthropology degree at Queens University, the staff were supportive and understanding about when I had to miss classes or needed an extension. My Masters degree was a little more complex, as I moved school: Ironically the school of medicine struggled a bit with access needs but, by the end of the year, I managed to become the first student in my department to get alternative assessments due to a disability. It was stressful fighting for this but, in the end, I hoped it would open doors for disabled students like myself in the future.

My boyfriend and my mum are my main carers when I’m not at Uni, and they link in with me via video chat to help assist with remembering medications and other stuff. Recently, my partner and I have begun reading a chapter or two of Harry Potter each night via video call to each other. (I’ve found doing a PhD can be very isolating, and this simple technique ensures I can actually talk to someone and maintain personal and emotional contact. Plus there is always the added bonus of  escapism to the magical realm of witchcraft and wizard)!

Finally, I’ve also added Pokemon Go to my regular routine, to kind of encourage me to go out, as well as having a few mindfulness apps on my phone that I dabble with. In my free time, I like listening to the occasional podcast, or watching things on YouTube (I’m really into American politics). At the end of the day, it’s important to try and set certain times for work, and other times for relaxation. I find that using a timer or setting alarms can really help with this.

4) What do you think are the main barriers to people with lived experience entering the research/PhD arena? How do you think accessibility could be improved?

I’ve faced quite a few barriers to get to where I am: My first undergraduate degree ended with me having to leave as, despite being cleared by my own health professionals, the University refused to let me take part in the required placements. Unfortunately, this kind of thing is something I hear of quite a lot, having volunteered with the NUS on disabled student committees in the past, and currently with the NUS-USI (the Northern Irish branch of the British/Irish students’ unions). Occasionally, disabled students will come across people who make assumptions about their disability and how it will affect them, without actually asking them how it might impact their studies, meaning the wrong level or type of support occurs or, as in my case, they decide (against medical advice) that the student shouldn’t be allowed to complete their degree.

It’s important to recognise that, while students can access disabled students’ allowance, it needs to be utilised in the right way; and that, for some, this money has been decreasing gradually, without their university being able to cover the short fall, leading to a two-tier system of support. Choice of university is key, but disabled students cannot take for granted that their first-choice university will be completely accessible; be that physically, financially, or otherwise (e.g. offering alternative assessment formats).

Another major concern for disabled students, or those with additional support needs, is whether they will be able to form a support network away from their friends and family: When you have lived experience, especially if that experience is of something deeply stigmatised (e.g. mental health issues), it can be extremely difficult to know how best to go about building a support network because, on one hand, you may feel that you want a ‘clean slate’, i.e. not wishing to ‘out’ yourself as having an illness and/or disability. This is a tactic I myself have tried, sometimes feeling like the only person with my condition in the student village I was living in, and it was very lonely. I later found out that everyone actually knew about my condition, and it wasn’t as much of a secret as I thought. After that, being open about my struggles made me realise who my real friends were. It also meant that people no longer assumed things about me, as we were finally open and communicated clearly with one another. That being said, when it comes to some mental health issues I have, it can be extremely hard to communicate how I am feeling at times, because a loved one might get frustrated and upset by what you have to say. My boyfriend eventually took lessons run by a charity on how to support someone with mental health difficulties, and we now have a better handle on how to talk to each other. He now realises that, sometimes, he is talking to the illness, rather than to me per se.

{MentalAcademic: Yes, I think this can sometimes be a very difficult thing for people to grasp who haven’t got lived experience of mental health issues. It can be hard for them to separate the person from the illness, at times. This, unfortunately, can lead to breakdowns in communication and, sometimes, the relationship itself. I’m glad your boyfriend found that taking classes helped}.

5) As a campaigner and mental health/disability advocate, you have been very open about your own experiences. Was this decision a difficult one to make? Have you been met with any prejudice or discrimination as a result? Would you advise others to be open about their own experiences?

To be honest, being open isn’t for everyone. However, I choose to be now because, in the past, I’d find myself in hospital with no one coming to see me, telling family I was at a friend’s house so as to not worry them. As I’ve already said, being open showed me who my real friends are. (Previously, when it was more of an open secret, a girl in my flat used living with someone who had a disability as an excuse to be granted an extra year at uni, as she had spent the past year messing around)!

{MentalAcademic: Eurgh. That is DEFINITELY not okay}.

I’ve also found that being open allows people to ask me the awkward questions, which allows them to understand better, without asking someone who perhaps isn’t so open to answering such enquiries themselves. On the flip side, I’ve faced issues with some health professionals who make assumptions based on insidious myths about mental health that still permeate our culture, which then affects my care. In fact, during the time I was working in a hospital on my undergraduate dissertation project (looking at peoples’ perceptions of eating disorders), one member of staff called me a ‘nut job’, reiterating this phrase to other patients and their families in the hospital I was working in. She even took my pens off me, insisting that they were a ‘dangerous weapon’. You can imagine how impressed I was…

Was it difficult making the decision about whether or not to be honest about my experiences? Sort of; I come from an area where everyone knows everyone and where, when someone had died from suicide, people said they had suffered a heart attack, despite knowing exactly what had happened. It’s the sort of area where people tend to say, ‘What would the neighbours think‘? and, as I have younger siblings, I had to weigh up those kind of considerations in my head. In fact, despite years of being open about other stuff, when I decided to broach the topic of a diagnosis of Borderline Personality Disorder (which is somewhat controversial even amongst the mental health community) for a BBC Newsline piece, many people who knew me asked me to pull out for fear of the stigma associated with that particular diagnosis. In the end, I went ahead anyway because it is exactly that sort of thinking I am trying to challenge.

I think, overall, being open about things regarding my mental health and disability has been better for me and my care. It has allowed me to build a proper support network, and feel able to really stand up for my care needs with the people who back me. The only real issue is you that absolutely have to be emotionally prepared for ‘coming out’ about these issues; I once had someone tell me I was wasting a hospital bed, and that I’d better soon die so that a cancer patient could have the bed instead. Incidentally, one of my many illnesses is anorexia, which not only the highest mortality rate of any mental illness, but is also more likely to kill you than some forms of cancer.

6) Peer research/co-production is becoming a hot topic, especially in mental health/disability research. What do you think are the challenges and advantages of involving service users in research?

I think involving service users is absolutely vital. That said, I think the selection of service users should not solely be the responsibility of staff; Disappointingly, I am aware of some individuals, including myself, being skipped over for inclusion in some research studies, precisely because they might skew the data in a different direction to that expected or desired. Of course, I recognise that self-selection can skew things in its own way, but that does not make staff choice necessarily any better. Random-sampling of participants from a larger pool is a good option but, again, this can be problematic if staff determine who should be in the pool participants are drawn from in the first place. Ideally, all possible participants who meet the eligibility criteria should constitute the population service users are drawn from. Undoubtedly, sometime patients will be too unwell to take part; however, sometimes when a person is having issues with the service they are using, in that it isn’t working for them and they are not getting better, it is especially important to know why these particular instances are failing and that we capture these voices.

Unfortunately, in mental health and disability, we can often tend to see services as a ‘one size fits all’, which is certainly not the case. Patients who are deemed to be ‘not engaging’ or ‘challenging’ by practitioners can then get sidelined, despite the fact that these behaviours can often be resolved by employing very simple changes or adaptations to one’s care. It is for this reason that it’s so important not to try and ignore these perspectives, but to represent the whole spectrum of patients’ experiences of the mental health system.

{MentalAcademic: Yes, I totally agree with you there, Felicity. You make some really good points. I think if service users are to be utilised meaningfully, this is how it must be done going forward}.

7) Thanks Felicity, this has all been really interesting and insightful so far! Finally, can I ask you what your hopes are for the future? Where do you think research/policy needs to go? Do you have any personal causes that you are especially passionate about?

What are my hopes for the future? I suspect i will look into entering medical anthropology (the study of those factors affecting heath and well being) in some form. I’ve always wanted to work in health care. I’d also love to see equal marriage in Northern Ireland; free, safe and legal abortion; and, an overhaul of the current mental health services there, as we currently have the highest suicide rate in the UK. That’s not okay.

We also need to have a Government again; one that listens to the people and looks to the future, if we are to move forward. Overall, my personal future hopefully involves less hospital visits and maybe, just maybe, being able to bring sweeping change to Northern Irish policy.

{MentalAcademic: Wow. What can I say? Those are certainly some big ambitions but, having seen what you’ve achieved so far with only a couple of decades behind you, I have every faith that you will be able to achieve them. Thanks so much Felicity for your time, you really have offered us some interesting and thought-provoking ideas here. I wish you all the best for the future, both personally and professionally, and look forward to hearing more about your work in the coming months and years}.

If you would like to keep up with more of Felicity’s thoughts and work, you can find out more about her from the following places:

Personal Twitter

Academic Twitter

‘Chronically Fabulous’ Facebook Page

Charity Fundraiser