I wanted to write a blog about what it’s like hearing voices, and having psychosis in general. People are often panicked at the thought of psychosis and to be a voice hearer carries a lot of stigma. There is so much misunderstanding around psychosis in general, and hearing voices seems to be the top of the pyramid as far as stigma goes. In this blog I will explain a little about what it’s like to hear voices, how they start and how they are managed, and I’ll also explain about other forms of psychosis that often go alongside voice hearing.
1 How do voices start?
I will give you an explanation about how my voices started but remember that everyone has a unique experience. My own voices started during my first full-blown manic episode when I was 26 years old. I’m now 35. For me I interpreted the voices to be tiny angels guiding me and giving me advice. I was not afraid and I enjoyed the experience of hearing them. I thought I was being given special supernatural powers and I believed I would enlighten the entire world. At the time I also experienced visual hallucinations of the little angels floating about me. It was a very convincing psychotic experience for me and I didn’t even question if it was real. Eventually I came down from the mania and crashed down to depression, which is a common thing that happens after mania. During the depression I had really horrible voices telling me I was worthless and that I had failed as a human being and should kill myself. At that point I was terrified that I was hearing voices, and I was aware of how other people would perceive me as ‘crazy’, so I didn’t tell anyone that I was still hearing them. I just hoped that when I got over my depression they would go away. They didn’t, and when I eventually spoke to my psychiatrist about it she changed my diagnosis from bipolar to schizoaffective disorder. That frightened me. The word schizo anything was terrifying and to have it applied to my own experience felt very uncomfortable.
2 What kind of diagnosis do people who have psychosis have?
There are many mental illnesses and disorders that can have psychosis and hearing voices as a symptom, but it is also possible that someone can hear voices and not have a diagnosis. In fact many people don’t even come to the attention of psychiatrists and mental health professionals. It is estimated that between 5 and 28 percent of people hear voices at some point in their lives, so it is not as uncommon as most people assume. Many of these people will never need treatment because their voices aren’t negative or don’t bother them.
For people who do get ‘help’ the diagnosis can vary. I have a diagnosis of schizoaffective disorder but voice hearing is more commonly associated with schizophrenia. People can have psychotic depression, and also some of the personality disorders can have psychosis as a symptom, such as borderline personality disorder (otherwise known as emotionally unstable personality disorder). I have also known people with schizotypal personality disorder to hear voices. I’m sure there are others that I’ve not listed. Really the diagnosis isn’t so important. It’s just helpful to signpost a person to appropriate help, and a useful thing to have if you are too unwell to work and need to apply for benefits.
3 Do you hear the voices in your mind or as if they are coming from somewhere out loud?
Personally I hear them as if they are coming from outside my mind. Like real noise. Usually it feels like they are positioned to my left-hand side and often behind me, but sometimes I hear them coming out the walls, or just outside a door or window. It sounds (to me) exactly like any real voice or sound. I interpret that as having a radio in my ear which causes me to pick up the sounds I hear, often believing that I’m able to pick up people’s thoughts. I have in the past attempted to disable the radio but putting various things in my ears; once I even put superglue in my left ear (note, I do not recommend this!) I have however known people who hear them in their head as if having a second person thinking along with their thoughts. My voices are never muffled, but usually clear. Even when I have several voices talking at once, I know what they are saying, even if it’s hard to follow.
It’s interesting to note that it is possible to muffle them by using ear buds, or music via headphones. Many people who hear voices use these techniques.
4 Who are the voices? Are they people you recognise, or strangers?
My voices change depending on where I am in my bipolar cycle. For example I recognise them as ‘angels’ when in a manic state. I have two main voices that talk to me the most, which I call Janet and Fred. Then there are some other voices that occasionally appear, male and female, that haven’t given me names. I have a whole list of people I know whose voices I hear, the main one being Howard, which is kind of understandable if you consider the fact that he is the person I’m closest to in my life right now. However, I also hear my mum, a few friends, my abusers’ voices from the past, and a few other people that are either close to me now or who were in the past.
I also often avoid watching TV or listening to the radio because sometimes I perceive the voices to be coming through those media, like the newsreader is talking directly to me and will say my name and stare at me. I find this incredibly frightening so I don’t have a TV and I try not to watch TV when I’m alone or when I know my voices are likely to be active.
Sometimes when I’m on the bus, I think I can hear people talking about me, feel that they are glaring at me and that they have angry faces. At times this is so overwhelmingly scary that I’ve just got off the bus or phoned Howard (my partner) for a reality check. Voices and psychosis can be very difficult in crowded places because it’s easy to think you can hear people talking about you. I remember going to a busy vegan potluck once and it was mostly people I know and feel safe with, but I started to hear what I thought were their thoughts out loud: everyone was thinking horrible things, such as that I’m ugly, evil, selfish, they don’t want me there … I remember going to the toilet for a cry because I just felt so sad that nobody liked me. I get this kind of thing a lot when I’m out with friends and my voices are active – that feeling that you can read their thoughts.
5 What is the content of the voices?
One of the main things I hear when I’m hearing voices is narration. I hear two voices, Janet and Fred, talking about me as if I were just listening in on a conversation so, for example:
“She’s lying in bed, she knows it’s time to get up, she’s putting her slippers on, we are going to annoy her today, her dogs are going to die and then she’ll be all alone, nobody likes her, she’s useless, she’s a whore” …
I could go on but this referring to me in the third person is usually what I hear and then occasionally they will give me instructions like “cut yourself, kill yourself, go back to bed!”
When I hear people I know, I hear things like “She’s useless, I don’t like her, I don’t love her anymore, I wish she would disappear, she should just kill herself, die, die, die.” Sometimes it feels like a whole group of people are standing behind me all talking at once, sometimes even yelling at me in a really intense way. At times like this it takes all my willpower not to curl up into a ball and cry.
Saying that, it’s also possible (though not as often) that the voices are positive. I get my partner Howard singing to me songs that remind of of him or us. I sometimes get him telling me things I want to hear such as “I love you, you’re special to me, I want to be with you forever”. Also I get motivational voices saying “you are strong, you can do it, everyone loves you”. The positive voices are very nice and encouraging, however it can change at any moment to negative and I’d say it’s a 70/30 split on good and bad. Obviously when I’m manic my voices are almost always nice, however they also give me advice that could be dangerous, such as to climb off North Bridge and fly, walk on railway lines (which I have done) and climb up tall structures.
6 Non-medication strategies to deal with hearing voices
It is often the case that the medications that doctors give you to stop the voices either don’t work or only partially work. I get an injection of haldol once every three weeks and that works really well for me; however, the last few days before my next injection is due, I start to hear them again and often feel paranoid. Fortunately I’ve been going to a hearing voices group (at my local hospital) for the best part of a decade, and I’ve learned many strategies to help me cope with them when my medication isn’t enough.
The biggest strategy I use is music. If there is loud music being blasted into my ears, for some reason that blocks them out. Usually it has to be headphones though. I also reality check with people I trust. I can always phone or message Howard and he is usually happy to tell me that what’s happening to me isn’t based in reality and that the bad things the voices are saying are not true. Sometimes I have to negotiate with the voices. If they are being very intense and demanding I tell them I will give then ten minutes of my time at a time that’s suitable to me and I keep that agreement. I ignore them up until that point then I give then ten minutes and after the time is up, I go back to ignoring them. For some reason this technique seems to settle them down.
There are times I want to tell the voices to shut up or fuck off. I have in past buried my face into a pillow and screamed at them. If I’m out and about and have the urge to talk to them, I’ve learned to talk into my phone and then I don’t look ‘crazy’. Sometimes I write a text out of what I want to say to them, then delete it or I’ll tell someone I trust what they are saying and get their perspective. Putting music that I love on in the background can also be useful because it encourages them to sing rather than attack me.
7 Medication
I’m not going to go into detail about medication, because I have already done so recently in other blogs, but medication can help with psychosis. However it is rarely a cure and the side effects can be devastating. Medication is not the easy fix that people think it is. I have got my hopes up so many times when my psychiatrist has put me on a new medication and it’s failed. I had given up with meds until I finally agreed to swap to haldol. For me the haldol helps a lot. I’m free of voices for two weeks out of three, but I’ve met other people who tried haldol and it just didn’t work or the side effects were so unbearable they had to quit. There are lots of antipsychotics, and if you decide that you want to go down that road, be prepared to try a few. Taking powerful medications like this shouldn’t be taken lightly. Fundamentally it changes your brain, but for some people it’s just needed because having psychosis 24/7 is so difficult and there really is very little quality of life.
8 Causes of psychosis/hearing voices
The reality is that nobody is certain what causes voices and why some people have them and others don’t. It is believed that brain chemistry plays a role and something to do with dopamine levels. There is also supposedly a genetic link (a few years ago I participated in a study) and that makes a lot of sense to me, there has been mental illness in my family. Trauma is also thought to be a cause and especially trauma in childhood. I’ve been through some life-altering trauma myself and I find it easy to believe that this plays some part in my psychosis and mental illness in general. My psychiatrists’ theory into this is that some people are born with a genetic disposition to psychosis but for some it will never be activated whereas others have the genetic disposition and experience trauma and this triggers their illness. Taking certain drugs can also bring on psychosis or make it worse. For example, I occasionally use cannabis for pain relief. I have to be very careful though, because it can trigger my voices. I have to weigh up the benefit of pain relief with the risk of my psychosis getting worse.
9 What can you do to help someone who is hearing voices or experiencing psychosis?
There are many things people can do to help. The first is reality checking. It doesn’t always get through straight away but it does help. Howard will remind me that I’m not telepathic and therefore I cannot hear people's thoughts. Sometimes just being with the person is enough. I remember when I first started hearing voices I was terrified of being alone because then they would attack me. A friend staying with me during the time it was most intense was really helpful. If you can’t be there in person chat to them on the phone, or even distract them with texts or messages. Doing practical things for/with them can also be helpful. For example when my voices are bad I don’t really feel safe leaving the flat for long. Things like shopping and other errands just don’t get done. A thing that would help would be for friends/family to offer to come with me outside – not do it for me, but support me to do it, which builds my confidence up. If the person has no professional support try and explain to them that it might be important to get help and encourage them to go see their GP, CPN (community psychiatric nurse) or psychiatrist (if they have one). Encouraging them with basic tasks such as personal hygiene, healthy sleep schedule and eating and drinking are all things that friends/family can help with. As a rule though let the person do as much for themselves as possible, because you don’t want to disempower them. They should be supported to do things, not have people doing things for them!
10 Are people who hear voices dangerous?
The reality is someone with psychosis is more likely to be affected by violence than to cause it. They are also far more likely to be a danger to themselves (suicide/self-harm) than they are to hurt others. Yes, there are some people who have psychosis who have committed a crime, either because of their voices or not, but the reality is the percentage is small. You do not have anything to fear from someone with a diagnosis that contains the word ‘schizo’. People with psychosis need empathy and understanding, not fear.
I hope I’ve given some insight into what it’s like to hear voices. There are likely things I’ve not covered, and if you have any questions then feel free to ask me in the comments or you can find me on Instagram as little_miss_black_sheep, or on Facebook as Jools Christie (if you add me on Facebook please drop me a note to tell me who you are!)
