Real life experience 1
Psychosis is a mental health problem, usually triggered by another mental health condition, for example bipolar disorder or schizophrenia or severe depression. It can also be triggered by drug misuse, traumatic events, or other physical conditions such as Parkinson’s.
My experience of psychosis was triggered by a manic episode, linked to bipolar disorder. I can talk about this freely now, and accept that I had been experiencing psychosis, however whilst I was symptomatic, there was very little anyone could have said to me to make me believe that what I saw and felt was not real life.
This lack of insight is not uncommon for people experiencing psychosis but can make sufferers extremely difficult to reason with. No matter how many times I was told that the things I saw were hallucinations, or that my thoughts and feelings were delusions, I simply could not believe it; from my point of view, it was my family, friends and professionals who did not believe me which made having psychosis so very lonely. I truly felt, for a long time, that it was me against the world and felt so rejected by my friends and family who appeared to no longer be on my side. I was terrified, calling out for help and it appeared that no one was listening.
Everyone who experiences psychosis will experience it differently and I do not believe that there can be a ‘one size fits all’ model for interacting with someone with psychosis, however what I would say is try to imagine what it is like to be inside that bubble of psychosis. Challenging my thoughts and stating that I was wrong, only increased my loneliness, served to make me more upset and often angry. What I found most useful was when people would ask openly about something, giving me a chance to explain my point of view. Sometimes these open, non-judgemental questions, could help me to question my own thoughts, and as my condition improved, helped me to come to terms with a realisation regarding what was happening. This was not always the case of course, but at the very least, it showed me that these people were still here for me, they did not have to confirm my beliefs, just show that they interested in them and not dismissing me outright.
Watching someone you love experience psychosis is extremely difficult and it is likely that something you say or do will upset them while they are unwell. Should this occur, please try to remember that they are unwell and have very limited control over what they say and do, don’t give up. The most important thing you can do for someone experiencing psychosis is to be there for them while they ride out the storm, not just during the episode, but also afterwards. Dealing with and processing your experiences of psychosis after the events can be just as difficult to come to terms with as the experiences in the moment and I cannot express how grateful I am to my family and friends for their ongoing support with this.
Real life experience 2
I rise, I fall, I relapse, I crawl. That’s how it goes.
Every day I risk slipping back into the horror of the dark places I just crawled out of. No hope or joy exists in these dark places. Only intense sadness, loneliness, and the feeling of being lost in a world devoid of colour. Whilst people are living on the outside, I am dying on the inside. I go through the motions of not eating, or drinking. I withdraw from all the things that give me pleasure, not wanting to be a part of anything. My body wants to shut down, go to sleep, not wake up. I’ve lost friends to these dark places.
I was admitted to an acute ward on several occasions over the last few years, the first happened three months after I had life-changing surgery. I also suffer from an auto immune disease and my body takes severe reactions to certain medications making recover painful and slow. Despite having a duty of care, the aim of acute hospitals is to stabilize your mental health, not treat ill health even though the two often go hand in hand. The medication barely gets a chance to work and you’re kicked out after two weeks. People expect a lot from you after two weeks. Like there’s a miracle cure, a quick fix to mental illness. The reality is very different. Medication takes weeks, months to kick in and usually leaves you feeling ten times worse than before.
In January this year, I fought to stay at home rather than go through another admission. Home Treatment agreed it would be in my best interest although it brought its’ own challenges. I was in a self-imposed lockdown; trapped in the house with the parents for three months. They asked to sit in on my meetings with the Home treatment team. I’d no fight to me to argue. The questions asked, were repetitive, unnerving and irrelevant, yet I was expected to answer. I had to ‘reach out’, ‘open up’, despite how scary or awkward it felt. I had to ‘play ball’ with the hands that fed me my medication.
Sometimes I couldn’t put into words, how I really felt and said nothing. Sometimes I made things up, too afraid to speak my real thoughts out loud. My parents looked on in horror when they listened to my real thoughts which they were ill-equipped to deal with. No one got me, how could they? They didn’t live inside my head, they weren’t living my life. I would take myself to my room, sit on the edge of the bed, on the edge of life, just wanting to the shut the door on it.
Days, weeks, months passed. By March, the meds started to kick in and even though I still felt wiped out; I felt ready to pick myself up and start over – join the real world again. I took baby steps at first. Starting with self-care, eating and drinking with my meds so I wouldn’t feel sick. I got up, got dressed, even washed my hair. I have a thing about my hair. It always has to be perfect.
Then came the double whammy – the Coronavirus circus came to town and guess what – we were all forced into lockdown, real lockdown. My parents and I got letters to shield. There’d be no escape. Lockdown also coincided with the end of my Home Treatment. I was transferred to the Recovery Team, but I wouldn’t get to see them or my key worker. If I needed to talk to anyone I had to go online or chat on the phone – but privacy in the house continued to be an issue. I felt trapped. I wouldn’t get to see the rest of my family. I cried with frustration. Like everyone else, I became obsessed with the news, death, fear of dying, catching sick.
As the medication worked it’s way through my system, my brain slowly but surely began to re-engage. I don’t want to have a head like mushy peas. That’s not me. I wanted to think smart. But it’s hard on medication that gives you brain fog and slows you down. My family set up a WhatsApp group. They shared news, tips on well-being, posted memes and pictures of flowers and birds. I felt a more connected, like I wasn’t missing anything. Then one day the sun came out for me and said Hi, Karen, what we gonna do today?
My niece and sister bought bikes. I thought, I could do that. I traded my heavy old bike in for a lighter framed model, got myself all geared up with cycling gear from online stores and was ready to cycle for the first time in 10 years. Next, I dusted off my laptop and enrolled in some of the new recovery college online courses by Zoom. They helped build my confidence in public speaking and sharing my thoughts with others in a safe environment. I got a buzz from doing them and decided to search for some more online courses. I discovered New Horizons through Action Mental Health and got a referral to enrol on 7 courses including one in self-esteem, coping with anxiety and even creative writing. My days are now filled with learning. I bought myself some self-help books on Amazon, like ‘Keep It Simple’ by Hazelden and ‘Emotional Intelligence’ by Gill Hasson. They have really helped. At night, I listen to calming music. I love finding memes and inspirational quotes to guide me and put a smile on my face during the day.
Of course, I don’t have a crystal ball to see how I’m going to get from A to Z, but I don’t need to. I know I will always have flashbacks and set-backs. I know it will always be a struggle to stay on top of my game. But for now, I will tell myself ‘try not to worry about how you get there or where you end up, just live in the moment’. It may take all my energy. I might fall down, and relapse but I will find the strength to get up and go again.