Psychosis

What is psychosis?

The following experiences are associated with a diagnosis of psychosis:

• Changes in perception: Changes can happen where you hear, smell, feel, taste or see something that other people don’t experience. The most common one is hearing voices.
• Unusual distressing beliefs: This is when you feel that something is happening around you that you might struggle to explain. It may be a feeling that people are going to hurt or control you in some way. This can make you feel very unsafe.
• Confused thinking: You may notice that you can get very confused by your thoughts. You may feel that you cannot explain yourself very well.
• Other difficulties include a loss of interest in things, low motivation and low mood. You may find it difficult to say how you feel. You may not talk very much and distance yourself from people and maybe stop taking care of yourself.

Causes

The main causes of psychosis are thought to be:

• Stress: Experiences of psychosis like those above are often triggered by stress. Stress can come in a number of forms. However, it can be an everyday problem, such as difficulty with work, studies or losing someone close to us. Long-term stress, such as family tensions, can also make it worse. Sleep deprivation is also a very common trigger.
• Traumatic life experiences: Recent research found some people with symptoms of psychosis have also experienced traumatic events within their life. This is particularly linked to hearing voices.
• Mental health diagnosis: Psychosis is associated with conditions such as:
  • schizophrenia; bipolar disorder; post traumatic stress disorder, personality disorders, severe stress or anxiety and severe depression (including postnatal depression).
• General medical conditions: There are some medical conditions, such as viruses and infections that can trigger episodes of psychosis.
• Substances such as alcohol or drugs: Drug misuse and drug withdrawal can both trigger psychosis. Drugs that are associated with this are:
  • alcohol; cocaine; amphetamine (speed); methamphetamine (crystal meth); MDMA (ecstasy); cannabis; LSD (acid); psilocybins (magic mushrooms); ketamine and M-Cat.

Care coordination

A care coordinator would work with you to identify specific needs and make sure these are met. These needs include housing, issues of safety and having adequate roles, routines and activities to fill time with.

Medication

There are a range of medications which can help. A doctor should discuss these with you so the right one can be prescribed.

Psychological treatment

Psychological therapies help people make sense of their experiences. They help them understand why they might have started and help their level of distress. NICE guidance recommends that everyone with a psychosis should be offered psychological therapy. Such as cognitive behavioural therapy, family interventions and art therapy.

Recovery

Psychosis is more common than most people realise. It is thought that between 3 and 10% of the population hear voices that others do not. People tend to seek help when their experiences either become very distressing for them. Or they feel unable to cope with them. This is when people might ask for support from services or seek a diagnosis.

Research carried out in 2010 found that in England in any given year. There would be one new diagnosed case of psychosis for every 2,000 people. Another study found around one in 100 people have at least one episode of psychosis during their life. Such as hearing or seeing something that others do not.

With the correct level of support, people find ways to deal with and recover from distressing voices and experiences. Sometimes these experiences can change during your recovery process, for example voices may become quieter or less demanding or critical. You may also feel more able to control them.

I’m worried about someone else

Advice about what to do if you are worried about a friend or family member who may be experiencing psychosis.

What can I do?

You may be worried about a friend or family member who may be experiencing psychosis. It’s really important that they seek help from their GP as soon as possible. They will be able to advise them on what to do.

Psychosis can be a very scary experience. But it can be successfully controlled. This is through medication and other treatments. The earlier psychosis is treated, the quicker your loved one can recover. There are a number of psychological treatments that can be used to aid a person’s recovery. Such as speaking to a GP. They will be helpful in explaining what they are and what the best course of treatment may be.

You can also show your support by:

• Offering to attend GP appointments.
• Researching psychosis so that you have a better understanding of the condition.
• Reminding your loved one that you are there for me, if and when they need you.
• Show patience and understanding. It can be a very frightening and lonely experience.
• Try not to judge or tell your loved one that their experience isn’t real. This can make the situation worse, as the experience is very real for them.

Personal Experience 1

‘Psychosis is a mental health problem. It is 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. It was inked to bipolar disorder.  I can talk about this freely now, and accept that I had been experiencing psychosis. However when I had symptoms, no-one could make me believe that what I saw and felt was not real life.’

This lack of insight is not uncommon for people experiencing psychosis. This can make sufferers extremely difficult to reason with.  I was told numerous times 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. This made having psychosis so very lonely.  I truly felt, for a long time, that it was me against the world. At this time I felt so rejected by my friends and family. They 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. 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

Challenging my thoughts and stating that I was wrong, only increased my loneliness. It served to make me more upset and often angry.  What I found most useful was when people would ask openly about something. This gave me a chance to explain my point of view.  Sometimes these open, non-judgemental questions, could help me to question my own thoughts. 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. 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. You 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. This is while they ride out the storm, not just during the episode, but also afterwards.  Processing your experiences of psychosis after the events can be as difficult as the experiences in the moment. I cannot express how grateful I am to my family and friends for their ongoing support with this.

Personal Experience 2

Starting over. 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. 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 stabilise 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.

I fought to stay at home

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. Wanting to the shut the door on it.

Time passed

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. To 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 and that 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.

Medication started to work

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. This is when I traded my heavy old bike in for a lighter framed model. I got myself all geared up with cycling gear from online stores. I 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.

New Horizons

I discovered New Horizons through Action Mental Health and got a referral to enrol on 7 courses. This included one on 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. 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.