The reality of living with psychosis

Perceptions of what it means to have a psychotic episode are often distorted by the media and misinformation, so here, Katie Conibear is pulling back the veil to reveal their first-hand experience of what psychosis is really like, and, crucially, how they manage it

I haven’t been sleeping, and I’m feeling exhausted, stressed, and overwhelmed. I’m in the early stages of psychosis. It starts with voices. Voices that I can’t understand, who chatter incessantly in my ears, and all around me. It feels as if I’m in a crowded café, and the room is heavy with voices. Sometimes they’re raised, sometimes they laugh or shriek and it makes me jump. Occasionally, the voices are quieter, and fall to a whisper, so I can’t quite make out what they’re saying, or if they’re speaking to me.

Then, the psychosis morphs into something else, and I start to have delusions alongside the auditory hallucinations I’m experiencing. I start to believe something is wrong with my internal organs. I have no evidence of this, and I don’t feel physically unwell, but the belief something is seriously wrong is incredibly strong. I start to believe my organs are decaying. I feel nauseated and can no longer eat, except for bites off a plate every couple of days. I feel increasingly distressed, and as if I am about to die.

This was one of my personal experiences of psychosis. It’s something I have lived with on and off since I was a teenager, but psychosis looks different for everyone, and there are a multitude of differing experiences. There are a range of different types of hallucinations (seeing, hearing, or feeling something that isn’t there) and delusions (having a belief that isn’t true). Some people only experience hallucinations, others delusions, and for some, as I’ve described previously, both. It can be disorienting and scary to experience hallucinations and delusions. However, some people also have positive experiences of psychosis. Some people can find the voices they hear comforting and supportive, but this isn’t the same experience for everyone.

How I became aware I was in psychosis

Psychosis is challenging to live with, as it can feel as real as your partner or best friend talking to you, or a belief you know is true, like how two plus two equals four. So, it can be difficult for others to challenge, or for you to challenge, your thoughts and beliefs. Often, it leads to a loved one intervening, and getting help on your behalf.

What I’ve described was a rare episode where I did retain some awareness. I think because what I was experiencing was so unbelievable, logically I knew it couldn’t be true. However, the feeling something was happening to me internally felt so real and visceral it was becoming harder and harder to deny. I told my partner how I was feeling, and he knew straight away I was experiencing an episode of psychosis.

I was under the care of a psychiatrist and mental health team, and my partner was able to contact them and organise an emergency appointment. After speaking to my psychiatrist, my medication dosage was changed, and we discussed whether I might need a stay in hospital. I didn’t want to do this, so I was closely monitored by my mental health team until I started to feel better. If I had become more unwell and a danger to myself, I would have needed a stay in hospital though.

Methods to cope with psychosis and how to get support

The most important thing to do if you’re experiencing psychosis is to get support from a medical professional as soon as possible. This might mean a loved one contacting your GP or mental health team for you, as psychosis can make you feel personally as if there is nothing wrong.

Something that can be incredibly helpful is creating your own crisis plan in advance, so your loved ones understand what they need to do if you’re experiencing psychosis, and what your early signs of an episode look like. Make sure you share with them important phone numbers so they can get support for you from the right place quickly, and know of any specific wishes you have in relation to your treatment so they can support you in the best way possible.

There are a number of ways to try to support your ongoing mental wellbeing, and preventative methods to help your general mental health. Number one is making sure you get enough sleep, followed by keeping stress to a minimum, which I know is easier said than done! Sleep and stress are common triggers for a psychotic episode, but there are others, too. Misusing alcohol and other substances can trigger psychosis, or exacerbate mental illness connected to psychosis. I made a decision to go sober for my mental health, and it has made a tangible difference to me. It also means I sleep better, as in the past I have been prone to bouts of insomnia.

There are hobbies that can help manage stress as well, and I’ve also found activities which keep my hands busy help ground me in reality. These can be activities such as gardening, sketching, painting, woodworking, crocheting, or sewing – anything where you’re focusing on the moment and what you’re doing, and using your hands. When it comes to the symptom of hearing voices, I have found that listening to music, or even watching a favourite TV show or film, with headphones helps me separate the noises into which are real and not real.

It’s also invaluable to have a dependable, compassionate support network. This could be made up of family, friends, a mental health team, a therapist, and even supportive colleagues or classmates. Having people around you who understand psychosis, know what to do in a crisis, and can spot when you’re becoming unwell, can make a massive difference. Knowing I have a partner and friends who are available to listen when I need to talk – or even when I need distracting from voices or a delusion, makes me feel calmer, safe, and secure.

What it’s like now

Now, I’m in a much better place. I haven’t had a serious psychotic episode since the one I described. I’ve had what I call a few ‘blips’, where I experienced hallucinations, but this has been due to extreme stress – which I’m working on managing through exercise, mindful hobbies such as gardening and painting, and developing my night-time sleep routine. Having support from my partner and friends is incredible, and I’m always grateful for them. My partner and I have looked at my crisis plan, and made some changes so it’s easier and clearer for my partner to follow.

I live with bipolar type 1, and psychosis is a symptom of this condition (but not for everyone with bipolar). This is an illness I will have for life, so I’m constantly learning how to manage it through medication, therapy, and lifestyle changes. I will probably have psychotic episodes again, but I have plans in place for when it happens, which makes me feel safe and secure that I’ll be OK, and make it through.