Family and Caregiver Schizophrenia Discussion Forum

How common is it for people with schizophrenia to talk about their voices with family members

My brother is 55 now. As long as I have known him, he has never told anyone about what his voices are telling him. He also never discusses any delusions that he may have. He will switch the topic if you even discuss anything that is related to his mental health. I am relatively new to this site. I have been spending a lot of time reading everyone’s posts. It seems like most people’s family members will talk about their voices and their delusions. My brother only talks to me about very superficial topics for a very brief period of time. He generally tries to avoid talking to me for too long.
I would love anyone’s feedback.

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My son has never spoken about hearing voices. He has told me about people saying terrible things to him - that’s how voices present for my son. He looks around and “assigns” what he is hearing to whoever is closest to him. Even if the next person is quite far away, he doesn’t doubt that it was the far away person, his scz simply confabulates the situation to make it possible, he has told me he must have exceptional hearing. He tries to avoid talking on the phone - and I try to make sure people don’t try to talk to him on the phone- his voices really act up when he is on the phone.

We were so new to this whole subject of scz, that we didn’t connect the things he was saying other people said with those things being him hearing voices. We hadn’t been living with him since he left for college. Once he moved home and the teacher at our Family to Family class kept telling us she thought he had scz based on what we were saying. (We went to Family to Family because our son was telling us he had high anxiety and someone recommended NAMI)

We were confused and we were not buying the teacher’s diagnosis of scz - our son was so functional in many ways compared to what we were learning. Well, finally one day my son didn’t know I was in the back of the room and he burst into laughter and turned to the empty chair next to him and said, quite delightedly, “how do you know these things?” The voice must have said something quite funny. I began to watch more closely and the next time he suddenly got up and went into the bathroom, I listened outside the door and I could hear him talking with someone, but he didn’t have his phone.

My teacher’s son was aware of his sza and gave Peer to Peer classes. He attended one session of our class to give his In Our Own Voice presentation. Afterwards, he opened up the class for questions. I asked him to help us understand voices and he was very uncomfortable. His mom told me later that even though he didn’t suffer from anosognosia, he did not like to talk about his voices.

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How old is your son? Is he on medication now? if he is on meds, has that stopped or decreased the voices?

My son is 38, we “realized” he had scz when he was 31. My son is not on meds, I have not been successful in that particular endeavor. He does live by himself and he does pretty well as long as we move him before he gets too paranoid about his neighbors talking about him. If he lives in a place too long, his reaction can get pretty extreme as he will begin to hear the neighbors threatening him. So far moving him seems to reset the process.

My bf told me about his voices recently. We’ve been together for 10 years off and on. He has also recently checked out of my life.

My ex was a paranoid schizophrenic with full ‘insight’ and on clozapine, med compliant yet not great about remembering to take his meds. Sometimes he would ask me if I’d said something, or ask ‘there’s nobody else in the house, is there?’ almost matter-of-factly and when I validated that no I had said nothing and no nobody was in the house but us then he’d declare that it must be time to take a pill.
He was willing to discuss with me and his family about the voices. If he was hearing them I could ask what they were telling him to do (usually kill me, kill himself, not to call his mother to bring meds, kill her, kill the animals etc.)
Fast forward to my current partner of ten years. ZERO insight. Full anosognosia. No meds. Different variety of SZ. Suffers severe delusions but hasn’t necessarily evidenced behavior suggesting he suffers hallucinations. However, I’ve often wondered if we would know because if he was just hearing or seeing things and not necessarily talking out loud or telling us, I don’t think we’d know. He wouldn’t say anything or even discuss it I’m sure of this. He flat out REFUSES to seek any kind of therapy or treatment. Gets violently angry and refuses to talk about anything if it’s even mentioned. So… Seems case by case, yet again!

My 26 year old son hears and replies to his voices in a very low voice. It wasn’t always like this though. I will ask his was he’s talking about and he would said “Nothing”. He won’t tell me what the voices are saying. I’ll ask if they are male or female or are they yelling or whispering. Sometimes he’ll tell me that but never what they are actually saying. As long as he’s not trying to hurt himself I let it go…

My partner sometimes talks about his voices but only with me which makes it easier for me to understand his illness. Sometimes he refuses to talk about them as they are always negative. I really wanted to understand what is was like for him so i went on YouTube and watched a simulation and my partner said it is very much like that which helped me understand a bit more.
I have a new respect for this illness from watching it.

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I never thought about looking at a simulation on U tube. Thanks!

A few reasons why loved ones may not discuss voices or content of “conversations”:

First, they may not recognize them as voices per se. My experience is your brain tries to interpret what it hears in a way that makes sense to it. So since I believed the FBI was surveiling me and I heard unfamiliar noises, my explanation was that my sensitive hearing was such that if I concentrated hard enough I could pick out what they were saying. So what I said was the FBI was next door and would say what I thought they might be planning or doing. They aren’t “voices” if you think they are real.

Second, this may not be evident to caregivers, but pretty much every action they take gives an incentive NOT to talk about voices. From our perspective nothing but trouble comes from talking about voices. Mention them to a loved one, you get questioning, judgements, arguments, ridicule, and emotional outbursts out of frustration. Then you get whisked to a doctor who if you mention voices tells you something is wrong with you and you should take drugs you probably don’t want to take, or gives you a shot you probably didn’t want. It only gets worse the second and third time around. Once bitten twice shy. Talk about them to law enforcement and they might take you to jail or a mental hospital. No thank you. Talk about them to your friends or worse strangers, and you get concerned looks or you get shunned or otherwise ostracized.

If you want to retain some freedom or autonomy, it’s a much better strategy not to talk about them. Caregivers tend to look at things from their perspective, and view it as self-evident that their loved ones should want what they want and want to get better to please them, because it’s for their own good. Sufferers look at things from a self-preservation standpoint and unless they know it’s safe to talk about such things they probably won’t. Trust is a huge part of therapy. If you don’t trust someone, you aren’t going talk about voices or delusions, period.

Third, voices tend to react or comment about your actions or are wrapped up in delusions. And most of this feeds into paranoia and conspiracies, so it’s usually a good strategy not to talk about them, lest you incurr their wrath. If you have elaborate delusional systems, these are often wrapped in dangerous or illegal or taboo spaces like the FBI, CIA, the mafia, the Illuminati, space aliens or drug or pedophilia rings etc. So they may not speak about voices both to protect themselves and you. I have a hypothesis that conspiracies rely on emotional “hooks” such that there’s a sense of danger, outrage, urgency and fear, while balancing this with a sense of secret knowledge which objectively might seem plausibly true if far fetched but ultimately unprovable. If you look at the Qanon phenomenon, you’ll see these elements.

Fourth, voices and their content can be personal and somewhat embarrassing, scary or even mundane, and unless trained the average person wouldn’t know what to make of them or would misinterpret them. It’s a bit like talking about the content of dreams but with even more opportunities for embarrassment, stigma or ‘cringe’. Ever tell a lover or crush or friend about a dream and have it go horribly wrong? You think twice about it in the future. Talking about voices and their content can be revealing and makes the teller vulnerable in many ways. I certainly wouldn’t talk about hearing voices much less their content without some guarantee of anonymity, confidentiality or a good motivating reason. I think we’re back to trust versus self-preservation, and most of the time self-preservation wins out.

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Thanks so much Maggotbrane. You are really a great source of information .I am not sure if there is any information written in books about voices. I wonder are most of the voices generally controlling and not pleasant to listen to?
I know everyone is different, but it seems that FBI, CIA, Government etc. are general themes that are occupying the person with schizophrenia.
Did medication completely blunt your voices?

Thank you so so much for that insight. You are very well spoken in this illness and i understood everything. Thank you for sharing :slightly_smiling_face:

Thank you for that.
Every single part…
I honestly have no idea how to acknowledge appropriately how valuable it is what you share…

Trust. Is a huge part…

All my life I’ve not talked about the content of my voices, and quite honestly I couldn’t if asked to now.
It is so vague and situation specific
Try remembering the specific sentences of a conversation you had yesterday… it’s completely impossible
The voices are either thought echo, where the voices repeat my thoughts,
Paranoid usually… things like how I’m fat is an ongoing theme…
or most of all mean reactions to my thoughts and behaviour

I still have difficulty recalling whether my voices talk to me or about me because I think I can say it’s often more like a broadcast
Is that to or about? Kind of both at the same time, I really can’t be sure on this one.

My sister talks to her voices when alone in the room, this is a very recent development

She has said in the recent past that she now knows what we (our middle sister, who was also schizophrenic) that she recognises the telepathy we have spoken about.

As far as talking about delusions it is possible that if it’s ongoing or back and forth to the other state of being that it feels like something private or secret
Perhaps as a man it would be too private, as they are more secretive and self reliant
I have only ever mentioned subjects of what has been going on after it is clear that it’s all been in my head
Other than brief comments like ‘ I can talk to animals “

I’ve had many delusions so ongoing over so many years and so shameful that I wasn’t kind of in the loop like the rest of the population and I thought always thought it was a secret of the world that could never be mentioned

This last is a huge reason not to talk about it ever to anyone

My youngest sister, currently 7 years into her first late onset unmedicated episode sometimes confides her world view as though it’s all normal and she tells me how society is run etc… to the point where it makes perfect sense and is almost believable
She confabulates memories as they occur to her of things she overheard in our family aged 2 and a half

It’s kind of a mixed bag, but if it’s current, in spans way, or even if he goes back and forth to real life, what goes on in his head then it’s not a surprise that he will not confide

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I started on a more detailed draft that organized my thoughts on “voices”, but as @three relates it’s difficult to fully explain how they work. I’ve saved it and will try to organize my thoughts and tackle the subject later in depth. There’s a plurality of mechanisms in play that interact with other thought disorders and delusions. Your inner monologue runs amok and mixes with thoughts and external stimuli in disorienting ways where you ‘know’ or ‘learn’ things, but are confused about the source. @three mentions “telepathy” and at times that’s a fitting analogy.

I only had a few instances where I heard a “voice” in the classic Hollywood sense of a disembodied voice like a supreme being loudly making pronouncements or commenting on my life events. There are some scenes in the movie “Words on Bathroom Walls” playing now that featured a similar commanding voice which only broke through the rest when symptoms and stress were particularly challenging. The movie is based on a book that I haven’t read, but judging by the movie, it may talk about the phenomenon. I’m trying to remember if “The Center Can Not Hold” featured discussion of voices, if so it wasn’t memorable. As I said it’s difficult to describe which may be another reason we don’t discuss them much— it just opens a big can of worms.

I tend toward paranoia, so my experience was more perceiving (or misperceiving) known people, or unknown (or known) strangers talking about me. By “known strangers”, I mean entities I’m familiar with surveilling me. I’ll adds some links describing this “relationship”. Content ranges from criticism, observations and occasionally praise. On the whole, I’d say it was more neutral, detached and observational than commanding or negative, and my anxiety toward them reflected my general state and progress within recovery.

Drugs cleared my thinking and thus made it easier to navigate my perception of events and my inner monologue which had the effect of blunting the “voices”, but I viewed this as a side-benefit. I took the drugs to help me focus my thinking, not so much remove the voices and as my thinking was more focused, I “heard” them less. I’ve said in other posts, as my external world got bigger my internal world got smaller.

Per the FBI/CIA government conspiracies and their popularity, I came to this conclusion because I thought I was being surveilled, yet did not see my surveillants. I crossed state lines to get help, so knowing a little about jurisdiction and laws, the FBI seemed a likely “adversary.” We’ve all seen movies with covert surveillance and the name of that game is not to be detected. I think they may be a ready plausible explanation for the experience of seemingly being pursued by unseen forces. And such conspiracies are durable and stable for reasons I mentioned above. As you’ll see in the following linked posts, I was less scared or controlled and more irritated by their “presence” and just wanted them to leave. Eventually a sort of Stockholm Syndrome set in and I began to identify with them. Frankly I’m a little disappointed in myself that I wasn’t more original. If you find a way to step into the mindset, you’ll likely see a sense of ‘logic’ to most delusional systems if you dig deeply enough.

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I can’t remember what Elyn Saks says about hearing voices in her book, either, @Maggotbrane, so clearly it wasn’t memorable for me, either.

I did have the privilege of hearing her present at a conference several years ago (she said rarely gives public presentations any more, as she realizes how much the stress of doing so kicks up her symptoms afterwards, and she told us she knew she’d be experiencing an uptick in her voices in her hotel room that night).

She did talk about hearing voices during the presentation and in the subsequent Q&A, a member of the audience asked her why she thought it had taken as long as it had for her to realize she was hearing voices?

She struggled to answer this and ultimately gave us three or four reasons, the first of which was that she had just assumed that everyone had the same experience and so it had taken time for her to realize that her experience was different than that of most other people - which made sense to me because ultimately the only mind we have direct access to is our own, so why wouldn’t we always start with the assumption that others are experiencing something similar to what we experience?

Unfortunately, I’ve forgotten the other reasons she listed, but I do remember thinking at the time that her reasons all made sense when taken individually but really didn’t hang together as a whole - which would be expected for someone trying to put words to experiences that are very challenging to describe with words.

Honestly, @Maggotbrane, and with the highest respect for Elyn Saks, I think you have been able to put words to your experience in an exceptionally clear way, and your explanations always hang together and make perfect sense.

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Thanks, it may have something to do with my background being in science and her’s in law. My theater experience may help with thinking from different perspectives and about presentation. My symptoms are/were not being quite as severe either, and have largely left me later in life. I feel indebted to her, as she took a bullet for many high functioning when she wrote her story. At the time, she encouraged more to follow her in “coming-out”, but my instinct has always been that it would be as stressful or more for me, as it has become for her.

At the height of my psychosis before being hospitalized, I had a grandiose delusion that when I recovered I would help find a cure for AIDS because I was “almost infected, but didn’t get the disease”. I look at such delusions as inspiration to do grand things, just not those specific things, and to do them quietly. It’s how I approach what I do on this forum. I had a brush with a disease and have been blessed with a recovery, and the ability to share both perspectives hopefully with a little humility.

My question is I don’t understand if we are all individuals why are our love ones thinking of the same themes - I don’t get that - iam puzzled. No one else has the same dreams I have - so why are those themes consistent in people living with schizophrenia

@Lovemom that is an interesting question.