Coping with Voices and Hallucinations

Yesterday I attended a zoom class on psychosis. It was incredibly informative, and I couldn’t help thinking (and saying) that the presentation should be recorded and made available to the public.

Having a diagnosis or a label to give your condition some grounding (rather than just feeling like a bunch of random symptoms) massively helped when I finally was given mine. (I say given – it felt like a sentence when I received it. It’s only over time that I’ve come to accept it and feel the benefits of doing so). Knowing and understanding what you’re working with is half the battle.

Years after the crash, the subarachnoid haemorrhage (brain bleed), the Glasgow Coma Scale 3 (the lowest level of consciousness without being dead) and the month-long coma I might never have woken from, someone realised that my brain/mood/way of thinking might not be okay. Years. That’s a long time to struggle without any understanding.

I got eventually got diagnosed with an ‘organic brain injury’ which gave me very little to work with. It caused me to dismiss any of the symptoms of mental illness I had as ‘just the brain injury.’ Leaving me feeling very alone with my struggle and, in the end, causing me to give up hope of getting better, feeling isolated because ‘no one else has my specific struggle/brain injury.’

I got given antidepressants and left to it. My low mood, hopelessness, isolation, years of terrible insomnia, combined with antidepressants, eventually led to my first (and worst) episode of psychosis. Two years later, I finally received a diagnosis of bipolar. It turns out you shouldn’t give antidepressants to someone with bipolar. They can increase your risk of developing manic or hypomanic episodes, i.e., make you worse.

I received the diagnosis of ‘Organic mood [affective disorder]’. Then ‘Ongoing or Recurrent Psychosis (high disability)’, and finally ‘Bipolar affective disorder.’ I read books about psychosis and bipolar to gain a better understanding of what I’m dealing with. But I couldn’t find a clear, simple explanation of psychosis that I could relate to. My searches just kept coming up with ‘it’s different for everyone.’

Here’s what I learnt during the class:

Psychosis can be described as a break from reality. It results in difficulties determining what is real and what is not, causing people to perceive or interpret things differently from those around them (in the form of hallucinations or voices). Persons may also suffer delusions, paranoia, disorganised thought and speech. Often these symptoms can feel so real that you may not realise you’re experiencing psychosis.

Psychosis is not a mental illness in itself; it is a symptom of some mental health problems. It is a symptom of schizophrenia, and occurs in many other mental health disorders. It can also be an effect of sleep deprivation, some medical conditions, certain medications, and drugs such as alcohol or cannabis. Having a relative with psychosis or schizophrenia puts a person more at risk of psychosis. The first episode is usually seen in teens or young adults.

Psychotic Disorders include:

Schizophrenia and schizophreniform disorder.

Bipolar disorder and severe depression.

Schizoaffective Disorder.

Brief Psychotic Disorder. 

Delusional Disorder.

Chronic hallucinatory psychosis.

But also seen in:

Schizotypal personality disorder.

Personality disorders, e.g., paranoid personality disorder, borderline personality disorder. 

Posttraumatic stress disorder (PTSD).

Induced delusional disorder / shared psychotic disorder.

Obsessive-compulsive disorder (OCD).

Dissociate disorders, such as dissociative identity disorder (however, here the voices are perceived as coming from inside your head, whereas for classic psychosis these are experienced as external). 

Different people experience psychosis differently. Some people have it only for a short time, whereas others have episodes throughout their lives or live with it most of the time. Psychosis is not distressing for everyone: Some may hear comforting voices or feel that it makes them understand the world better. However, other people find the symptoms disrupt daily life and make them feel tired, scared or overwhelmed.

There are positive and negative symptoms. The ‘positive symptoms’ are so called because they are thinking or behaviour that the person did not have before they became ill, and can be thought of as being added to their psyche. 

These include:

• Interpreting reality in a way that is not true; distorted perception of reality.

• False beliefs.

• Beliefs that are contrary to facts and firmly held despite disconfirming evidence. 

• Very common: 75% of hospitalised individuals experienced delusions. 

Some examples of delusions: 

• Persecution – feeling as though you’re in danger, getting spied on. For example, people plotting against you. Common – 60% of people with schizophrenia experience them.

• Control – thoughts, feelings, actions being controlled by an external source rather than you. Thoughts are not your own. They have been placed in your mind by an external source. For example, by placing a chip in your head.

• Thought broadcasting – your thoughts are broadcasted, so others know what you are thinking. 

• Nihilistic – part of you ceases to exist, you’re invisible, thinking you’re dead. 

• Grandeur – a false impression of one’s importance, fame, power, knowledge.

• Reference – external events/objects have a special reference for the person. For example, random conversations of strangers are about you.

Negative symptoms are so-called because they describe thoughts or behaviour that the person used to have before they became ill, but now no longer have or have to a lesser extent and so have been lost or taken away from their psyche. Negative symptoms may resemble symptoms of depression.

These include:

• Affective flattening – decreased range and intensity of emotional expression (for example, monotonous voice, expressionless facial movement).

• Alogia (poverty of speech) – giving very brief, empty replies.

• Avolition/Apathy – lack of motivation and interest to carry out day-to-day activities, for example, hobbies, household chores. 

• Asociality – little interest and desire for relationships with others. Wishing to spend time alone.

• Anhedonia – a loss of interest/lessening of pleasure.

• Loose associations/Derailment – drifting quickly from one topic to another.

• Neologisms – made-up words used in an attempt to communicate and often constructed by combining or condensing several words.

• Word salad – language is disorganised, and there seems to be no link between one phrase and the next. Eg: “The lion will have to change from dogs into cats until I can meet my father and mother and we dispart some rats. I live on the from of Whitton’s head. You have to work hard if you don’t get into bed… It’s all for a squab true tray and there ain’t so squabs, there ain’t no men… there ain’t no nothing besides my mother and my father who stand alone upon the Island of Capri where is no ice. Well it’s my suitcase sit.”

• Clanging – Thinking is driven by word sounds, e.g., rhyming or alliteration. Eg:

“D: What colour is your dress?

P: Red…Like a bed.

D: Why is it like a bed?

P: Because its dead.

D: Why is a bed like being dead?

P: I dunno…maybe its med.

D: What’s a med?

P: A bled.” 

The course of psychotic symptoms consists of three stages: The Prodromal Stage, Active Stage, and Residual Stage. 

Prodromal Stage:

First symptoms of psychosis usually appear in late adolescence/early adulthood (15-25 years old); usually associated with a stressful life experience or period of stress.

Before the onset, it is silent.

Onset usually represents a slow deterioration over around five years:

Withdrawal from normal life and social isolation.

Inappropriate emotions.

Deterioration in personal care and work/school performance.

Active Stage:

Starts to show unambiguous symptoms of psychosis, including delusions, hallucinations, disorganised speech/behaviour – full-blown symptoms.

Residual Stage:

Cease to show positive symptoms -> moving out of the active stage.

But negative symptoms may persist.

Interestingly, the onset of psychosis usually takes place after a slow deterioration over around five years. I was hit by a car in 2014 and developed psychosis five years later in 2019. Crazy…

I have suffered many symptoms. Not all at the same time, but often overlapping. At first, I believed I was dead. This eventually escalated into believing people could read my mind and invade my thoughts. People could communicate with me telepathically, just by looking into my eyes. When I drove past strangers on phones, this indicated that people I knew were talking about me. I believed I was extremely important and the centrepiece to a master plan that no one knew about. I just couldn’t tell if this were a good or a bad plan. My thoughts were word salad (and I assume my speech was, although it felt perfectly organised, if a little rushed/over-excited). Clanging made me feel like a poet. Then I suffered poverty of speech and lost interest in everything for what felt like an eternity.

Learning to live with psychosis rather than trying to get rid of it has helped immensely. 

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