Updated: Apr 2, 2021
Sam is a Birmingham based musician and poet who I'm really grateful to have met on the Birmingham poetry scene a couple of years ago. Today, Sam is sharing his story of living with paranoid schizophrenia and how the diagnosis came as a relief. He's telling us how he gets through the difficult days and breaking down the misconceptions which are created through the media.
1) Hey Sam, how are you?
Hey. Yeah not too bad thanks.
2) How are you really?
A bit down.
3) What made you reach out to share your mental health experiences through this interview?
I think anything that helps to raise awareness for mental health issues is a good thing. I also haven’t really spoken openly about it before and thought this would be a good opportunity to do so.
4) What is your mental health diagnosis?
Paranoid schizophrenia was the official diagnosis I received from the NHS.
5) Did the diagnosis of paranoid schizophrenia come as a shock to you or were you expecting it?
No, it was actually a relief. Previously I was diagnosed with depression, and although the medication I took and therapy I had for that helped to alleviate my low mood, it dismissed the other symptoms that I was suffering with. It wasn’t until it got to the point where I was so unwell that I couldn’t work or function properly that I went back to my doctor for a second diagnosis. I had to persist, but after a few appointments I was eventually transferred to a specialist who gave me the diagnosis of paranoid schizophrenia. I had already researched into the nature of the condition and had accepted that this might be the case and so I was prepared. Also, I had gone through hell for such a long time that I was relieved to know that from then on I would receive the right help and support that I sorely needed.
6) Is there a reason it took until last year to reach this diagnosis?
Yes. My struggle with mental health actually started when I was around eighteen with depression. However, at the time I was completely ignorant of mental health issues/ conditions and genuinely thought that being depressed was just part of growing up, and so I didn’t know how or where to seek help.
The first time I knew something was definitely wrong was my first experience of psychosis in my first year at uni. After a period of smoking cannabis heavily for a few months, I started hearing voices in my head (initially this experience was terrifying as I genuinely thought that there were people outside my room plotting to kill me). But I kept all this to myself at the time as I feared I’d be considered ‘crazy’ or taken away and hospitalised against my will.
Also, I’d add that the nature of the condition itself (i.e paranoia) makes it very difficult to seek help, because if you're deeply suspicious of the intentions of even your family, friends, doctors etc, then it can become near impossible to speak out. Still to this day I find it difficult to talk about my condition as when I try to verbalise my experiences of delusions etc, I'm very aware of how ridiculous and outrageous they would sound to someone who is unaware of my condition. For example, the time I was convinced that I was Jesus performing the miracle of feeding the five thousand (where as in reality I was working in Sainsbury’s selling reduced items). Or the time I thought that Stephen King was using his psychic powers to control what books I read. Or when I was wandering the streets of London at 3am interpreting every number 7 I saw as a sign of God and every number 6 as a sign of the devil. Or when I thought I was Stanley Kubrick travelled back in time to the film set of The Shining.
And so I’m sure you can imagine that at the time this would have been incredibly difficult to explain to someone with the hope of being taken seriously?
7) For anyone who doesn’t know what it is, how would you describe paranoid schizophrenia?
A particularly bad episode feels like being suddenly plunged into a nightmarish and dystopian parallel world where there’s a conspiracy against you and where everything you thought you knew about yourself and the world around you is suddenly changed. (The only other experience I would liken it too would be a bad experience on weed or a ‘bad trip’ on acid or other hallucinogenic.) However, schizophrenia is an umbrella term for a range of symptoms and it doesn’t always take the form of hallucinations and delusions. It can also just be losing interest in everyday life and avoiding social situations. For me that part of the illness has most affected my life.
8) When you tell someone your diagnosis, how do you hope they react?
Just with acceptance.
9) How does living with paranoid schizophrenia affect your life?
Before I was taking any medication I think it was the self-isolating that had the biggest impact on my life. It affected my social life as I’d avoid social situations which held me back from making new friendships as well as maintaining old ones. And it’s also affected my studies as whilst at university I often couldn’t face attending lectures and consequently fell behind on my work and eventually ended up dropping out in my third year. However, now that I’m receiving the right help and support in the form of therapy and medication (antidepressants and antipsychotics), I am able to go for periods of time where I’m hardly affected by any symptoms at all and so I can live a fairly normal life. For me the medication is really like a ‘safety net’ mentally. And I’m less likely to experience an episode of psychosis.
10) Without referring to your diagnosis, how would you describe yourself?
One of the good guys.
11) Have you learnt anything in particular about yourself through your diagnosis?
I think I’ve learned that I’m stronger than I previously thought in terms of overcoming my struggles with my mental health.
12) What is the most challenging thing for you about having paranoid schizophrenia?
Other than hearing voices that can be particularly nasty, I think I’d have to say that the delusions I’ve had in the past have been the longest and most painful experiences. Basically, for me the line between reality and imagination (or what isn’t real) can often become blurred to the point where I mistake hallucinations (voices, seeing people etc) as real. An example of a delusion that I experienced in the past started with messaging a girl on Facebook that I’d met at halls. It was someone that I’d had feelings for but never had the confidence to speak to. But anyway, we exchanged some friendly messages and it all seemed to be going well, until I then started hearing her voice in my head. I initially interpreted this voice as her trying to communicate with me ‘telepathically’ to confess her love for me. It took a few weeks of constantly hearing these voice and seeing her in hallucinations for the delusion to finally form. And then I was totally convinced that she was in love with me (I'd stress again here that there was nothing in reality to suggest that this was the case). But the experience of these voices and hallucinations sent were so real to me that it sent me on a real high, like being on drugs or something. I was totally ecstatic and started counting down the days until I returned to uni and could meet up with her and we would fall in love.
Sadly, however, when we did meet it became evident that this was not the case. (The sudden confrontation with reality is often painful and disorientating.) She told me fairly plainly that we were just friends and tried to sort of let me down gently. And really it should have been obvious to me that as we hardly even knew each other, the idea of being in love would be ridiculous, but I just couldn’t accept this as it completely contradicted what the voices in my head were telling me. I was also unable to notice that in reality she was distancing herself from me and I still went onto believe that she was in love with me secretly, and that it would only be a matter of time before we got together.
However, with each rejection from her I was repeatedly faced with the harsh reality that she didn’t have these feeling for me that I thought she had, and gradually coming to accept this sent me into a state of hopelessness and despair. Even just the thought of living in a world in which this particular person did not love me became unbearable. (I’m sure you can imagine how this kind of thing can really mess with your mind.)
I spent months in bed not being able to face the world and only thinking of her and trying to interpret any communication from her as a sign of hope that us getting together would be a possibility. This all went on for years after and even to this day to some extent. However, now that I know that I can be prone to this sort of thing it doesn’t affect me as much as I’m able to read the signs better.
13) Do you think people sometimes have misconceptions about people who have schizophrenia? If so, what are those misconceptions?
Yes. Schizophrenia is often the most stigmatised of mental health conditions. The most common misconception being that people with the illness are likely to be violent or dangerous (as it is often portrayed in the media) and although occasionally this does happen, it is often due to other factors such as drug misuse or not receiving proper treatment for the condition.
14) How does depression impact your life?
Apart from being just a ball ache in general, and having to deal with things like suicidal thoughts (which are particularly unpleasant), I guess I feel as though depression affects me most in terms of my confidence, as a constant low mood can often distort the idea or image that I hold of myself. For example, if I’m to summon up a bit of confidence I’d say that I’m a talented, attractive, kind and loving person with a bright future. However, my depression would say I’m nothing. An insignificance, an after thought, a non entity, a f*** up and a failure. And so my battle with depression is often a constant fight between this and opposing ideas that I hold of myself. And it isn’t always a battle that I always win.
However, I do think that depression can also hold a valuable life lesson. For me, a particularly heavy period of depression can often feel like a direct confrontation with the tragic nature of existence, and therefore I've often found myself forced to seek out truth, meaning and beauty in life to counteract this. Something that I think has helped to develop a more philosophical attitude towards life.
15) Do you have any coping mechanisms to help you through a difficult mental health day?
I mean, ideally talking it through with someone is often the best thing to do. But for me this is often easier said than done. So, on a down day my first port of call is listening to music. Lots of it. Music has always been a big part of my life (listening to and playing) and I tend to use music to help make sense of my own emotions. This was especially true in my late teens when I really worshipped and idolised the bands and artists that could express what I couldn’t, e.g: the chaotic self-conflict expressed in Nirvanas ‘In Utero’, the emotionally complex and cathartic noise of Radiohead's ‘OK Computer’, and the tragic beauty of Nick Drake ‘Pink Moon’. But not just music. I often turn towards art and culture, whether it be a poem, a film, a painting or a novel. Anything I find that makes me feel less alone. I think for me this quality is always the mark of great art.
16) Is there anything anyone else can do to help you through a difficult mental health day?
Having someone who can listen to you without being judgmental always helps.
17) If someone is reading this today and they have recently been diagnosed with paranoid schizophrenia, what would you like to say to them?
That there is hope and the diagnosis is not a life sentence. It is also still possible to lead a happy and fulfilling life.
18) How does it make you feel to talk about your own mental health with others?
I often find it difficult to be honest.
19) Do you believe it’s important for people to learn about and understand mental health issues, even if they have never knowingly experienced them for themselves?
Yes so important. Ignorance will always cause suffering.
20) How do you feel after answering so many personal questions today?
Yeah, not bad to be honest. I hope that I've done justice to my mental health experiences with my words.
Sam, thank you so much for doing this interview with me today. You've absolutely done your mental health experiences justice with your words. You've been so informative and reading this will help others to understand what paranoid schizophrenia is and encourage anyone who may relate to what you've explained to reach out for support. This will go a long way to raising more mental health awareness and I'm proud of you for speaking so openly, I hope you are too.
If you are reading this today and you can relate to any of the experiences Sam has spoken about, please reach out for help. There is help out there for you and you are worth helping. You don't have to do this alone. See a doctor, speak to someone you trust, or go to the 'support' page on this website where you'll find a list of important contacts which might be of help to you.
If you'd like to share your own mental health experiences in a future interview, drop me a message on the 'contact' page on this site, or message me on social media.
Until next week, look after you, you're important!