Jessica talks through her no-nonsense attitude to mental health chat.
Trigger warning: this post contains distressing references to psychotic experiences including threat of harm and threat of sexual assault.
I’m tired of the mental health narrative (to be fair, I’m tired in general.). It’s either relentlessly negative (for example, because someone has acted in a violent way) or relentlessly positive (for example, because someone has succeeded living alongside their illness, or managed to achieve remission). I’m so grateful for these positive stories which have helped get me through, and for the strength of the people who tell them. I have huge respect for the people who have managed to recover or found a way to succeed alongside their illness. I have looked up to these stories through my recovery and they’ve helped me get through. But I think we need to tell MORE stories. As far as I can tell, the majority of people’s mental health experiences fall in the shades of grey in-between these two polar opposites. Most people with psychosis, for example, struggle with episodes through their lives or have ongoing symptoms (only one third of people with psychosis have a single episode), and the majority do not end up back in work or achieve career success (some studies suggest that as few as 5.8% of people with psychosis are in work). Did I mention already that I want to hear these stories!? I want to hear the full spectrum of psychotic experiences to help build a bigger picture of mental illness. Stories of psychotic experiences were so important to me during recovery and I’m so grateful to the people who tell them. I want other people going through similar things to have a wealth of stories that they can relate to. Including stories where things don’t turn out so great and that capture the hopelessness I felt when I was first diagnosed.
The stories of success in the face of a psychotic illness helped me at first. I felt hopeful and optimistic. But then I noticed they had started to upset me. Why could I not achieve full recovery or at least success alongside my illness, like the people I obsessively reading about? Why couldn’t I start to feel like psychosis was a good thing that happened to me instead of the most horrible experience of my life, which I wouldn’t wish on my worst enemy (not even you, Robin)( just kidding, there’s no Robin). I kept trying to get back up from psychosis, which for me mostly meant getting back to work. And I kept failing. I got a job just like the one I’d had before psychosis. But after a week I was an anxious mess and I had to resign. Then I got a less stressful job. And two shifts in… you guessed it! I went through psychosis again and had to be hospitalised for 28 days.
And unfortunately, I still have lingering psychotic symptoms. They’re pesky and anytime I’m tired or stressed and sometimes when I’m not. These symptoms make me feel like there’s a conspiracy against me and make it difficult to function day-to-day. I’m going to be honest, this also makes it pretty hard to keep a blog online, but I’m going to give it a go because I feel (probably wrongly) that I have something to say about mental illness. I want this blog to be a no nonsense guide to psychosis (with added nonsense). From a quick scout online, there’s only a handful people writing about psychosis and I hope that we can change that together by speaking up.
Sometimes I feel like psychosis is my relationship (my real life boyfriend broke up with me by text when I started acting erratically). I live WITH psychosis. It is here with me all the time lying in wait for me to get tired or stressed so it can swallow me whole. If only I could get psychosis to dump me, then everything would be hunky-dory. But alas, we are betrothed (is that a word?!).
I know I joke about it (wouldn’t ‘Performance Anxiety’ be a great name for a stand-up act about mental health issues? Maybe it already is? Shall I Google?) but psychosis is, in my personal experience the absolute most traumatic thing which has ever happened to me. I thought I was going to be blinded, killed, maimed, raped, made homeless, given a terminal disease. And that’s just the things I can remember. These aren’t soft, fluffy things and I apologise in advance if they upset you, but they’re what I experienced. And I think it’s the kind of thing we need to talk about.
Was psychosis REALLY the worst thing that’s ever happened to me? Hmm… Would I take it back and switch lived with non psychosis me? In a heartbeat! I lost so much because of psychosis. First I lost my job. Which I loved, and which defined me. Then I lost my house, which I was forced to sell while I was still in hospital. Then I lost my relationship. Then I lost most of my friends (most people blocked me when I started texting them about the conspiracy). I lost time too: two consecutive summers were ruined because of psychosis. I can never get those months spent in hospital back. My 30th birthday was sandwiched between two involuntary hospital attempts and a suicide attempt (but I did managed to find time for a three-tiered rainbow sponge).
The thing is, I’m not the same person I was before psychosis. I know myself better now I think (I hope!). I tend to be kinder and more high empathy than I was before (at least, this is what I aim for). I’ve managed to make healthy lifestyle choices (like giving up the booze) which help keep me balanced.
I’m much more anxious now, and I often find it difficult to leave the house. For a year I was too scared to go into a supermarket because it felt like an insurmountable task. I would come out in a cold sweat just thinking about the self checkout machines. Why do they make them so complicated?
I’m just not the same person anymore. Things aren’t easy. In fact, psychosis lingers and if I stay up too late or even just do something strenuous, then I’m thrown right back into the conspiracy and I think that everything I thought before was real. Usually this happens late at night and is gone in the morning, but it’s scary and I do not like it. AT ALL!. It’s like I suffer from night terrors only I’m still awake.
I feel a general film of paranoia over the day, and I’m much more suspicious that people are against me which makes it pretty hard to meet people. I often feel like things are a scam when they are not. I also feel like I’m more autistic now, even though I know it doesn’t work like that. As though all the energy it was taking for me to seem neurotypical has just drained from me. Like I’ve thrown off the mask. I think they call this autistic burnout.
Also, I’m living in fear of psychosis. Everything I have rebuilt could come tumbling down (including my self-esteem) if I had another psychotic episode. But I can’t do anything about it. All I can do it take my medication as prescribed and try my best to limit triggers such as stress. And give up things like booze (did I mention that I’m nine months sober?). That’s the most I can do. To give myself the best possible odds, and the rest is left up to chance.
My experience feels different to the recovery stories I’ve been reading about in the media because the upbeat stories I so desperately seek out seem to me to be so hopeful and sometimes even go as far as to say that psychosis changed their lives for the better. I want more stories that acknowledge the hopelessness I felt when I was first diagnosed. I’m guilty of writing these inspirational stories too, and find myself wrapping all these terrible experiences neatly with a bow of inspiration around it. Maybe I’ll feel like psychosis changed my life for the better one day, but I don’t feel like that now. I feel like I have to lie to myself and say it made my life better, because that makes it easier to get on with things, but I just can’t quite bring myself to do it. This is just how I feel though. I think really I’m jealous. I hope one day that I will be one of these people, who turned it all around and made psychosis meaningful. That I will fully recover, or find success alongside my illness. Even though I wish for a spectrum of experiences in the narrative around mental illness, I’m still so grateful to the people who tell their stories who are optimistic about psychotic outcomes because they help give me hope.
Anyway, back to my point. I think sometimes we’re so busy tip-toeing around mental health issues, trying to prove that the stigma is unfounded, that I think we sometimes fail to be honest about how brutal they are. And I feel like that’s the kind of dialogue we need to share so people can relate to the experiences. We either hold up inspiring stories as the exception to the rule, or voyeuristically gape at the negative stories. Essentially: we need to stop sugarcoating mental health issues. I know some people have good experiences of psychosis but for me psychosis was ugly, traumatic, and emotionally scarring.
Psychosis is incredibly isolating, maybe in part because it’s so difficult for other people to understand. In my experience (and I can only speak for myself), it’s a hugely traumatic. I don’t even have the words for how awful it was. But I imagine you get the idea. It’s like jumping into a different reality where people really are following you. Like being plunged into the latest season of Derren Brown or Black Mirror or The Truman Show or even the Matrix. But talking about it, really does help me. Although the whole asking for help mental health narrative is a bit redundant when you think there’s a conspiracy around you and you’re decoding messages from the telly. I was past the point of being able able to ask for help when I was sectioned and I had no idea I was ill.
When I first got ill I searched online and read everything I could about psychosis. I was hungry for stories that helped me process my experiences and I gobbled up the few stories there were with satisfaction. but there seemed to be so little written about psychosis online. I needed a way to process these experiences and relate to them by reading the stories of others online. I’m grateful for all the stories people tell about their psychotic experiences but I really think we need to tell more stories! And I think we need to get across the horror film like experience psychosis can be to comfort people that they are not alone in feeling like their lives are ruined To help them find hope for the future. In a way, this kind of peer support like dialogue could help people find hope in the darkness. All I can do personally is to try and make sure there are more stories for the next person. To talk about my experiences of psychosis loudly, clearly and frankly. But together, we can change the narrative to include psychosis.