With all the awareness of mental health, why is psychotic illness never really mentioned?

[NightTerrier]

Am I BU to think that mental health issues are more then just anxiety and depression. You rarely hear anyone talk about having a psychotic illness.

I have paranoid schizophrenia and it's rare that we see anyone talking about it, despite the fact that it affects approx 1 in 100 people. I feel it is is still very misunderstood and stigmatised.

Even Bipolar is more widely accepted and you have people like Stephen Fry who have raised awareness for this severe mental illness. I still can't help feeling that it's much more acceptable and less stigmatising to have bipolar than paranoid schizophrenia.

In case anyone is wondering, No, I don't work and I do claim PIP for this and also for autism and long covid. Even the side effects from the meds I have to take for my schizophrenia are pretty debilitating, then I get delusional about how they are a means of the government trying to silence people that are 'more aware', so end up coming off them. Then there are the cognitive symptoms to deal with. Also negative symptoms, which is loss of motivation, social withdrawal and the like. Hallucinations and delusions are positive symptoms. I ended up having to give up work about 10 years ago after being particularly ill and haven't ever fully recovered since.

I get really angry when I tread all the rhetoric about people claiming benefits for mental health reasons. People do realise that mental illness doesn't just encompass anxiety and depression?

For what it's worth, I've never been a threat to others, only myself. I'm currently having to have a monthly injection as I get so paranoid about having to take antipsychotics and my lovely nurse visiting me to give me my injection usually ensures that I have my meds. Even with that in place I still get paranoid about it and refuse it periodically.

If your friends and family are ignoring and sidelining you following you telling them @GreenPoms then you need better friends and to distance yourself from family

Great thread and a very good point too.

'Mental Health Awareness' nowadays seems to be more concentrated on mental wellbeing as opposed to actual mental health conditions. I don't think a single person has never been anxious or depressed... both are normal human reactions, but they are so different to a diagnosed anxiety disorder or clinical depression.
I do think looking after your mental wellbeing is important, but very few MH campaigns now deal with illnesses at all, let alone more severe ones like Schizophrenia.
People are squeamish about things like psychosis and mania. They are all "you can talk to me if you are feeling low", but if you are manic or psychotic... they disappear.

I too am unable to work due to several MH conditions, and claim benefits too. I surround myself with people who understand and are in the same boat.

It is thought that estrogen is protective and this is why schizophrenia tends to come on later in women as well

The hormonal link should def be more explored. We know that after childbirth some women have psychosis that can be life threatening - I think it’s the rapidly changing hormones that throw them off kilter. Makes sense that this also happens during peri/menopause and teen years.

OP you look after yourself and thank you for this post. I am only recently on the ‘diagnosed’ journey of MH illnesses. I was finally diagnosed about three years ago, I’m in my 50s now.

diagnosed with PTSD from being raped and attacked as a teenager by a stranger and two very abusive relationships, I’d been struggling with all of that since 21 when I tried for the first time to get some help. Also clinical depression, that’s the reason I asked for help as I was really bad for 6 months no idea Hoe I survived tbh. And then due to it taking 4 years for anyone to bother to help me or diagnose me , as well as the lockdowns, I got crippling anxiety and agoraphobia. So that’s me now. The only help I have had is ten sessions of talking therapy after being diagnosed, no treatment whatsoever for the ptsd as the therapist had to choose to focus only on the agoraphobia to make my life a little better so I could get out and about again.

the recluse stuff you mentioned is how I am and thrn it’s so hard to get out again. I’ve had a bad bout of covid and been stuck at home for three months so I’m now panicking about going out around people again. It’s a big vicious circle.

Anyway the reason I’m replying is so that you know I’ve heard you. And yes all I hear is someone’s signed off with stress or a bit of anxiety. No one has a clue that when I say I have similar illnesses I mean what I mean. It affects every part of my life and my body. I cannot work. So the oh I’m a bit anxious posts everywhere are really not helping at all.

Thanks OP for this interesting thread and to everyone for their contributions. My brother suffers from chronic depressive psychosis and I have been involved in caring for him for years so I have a little insight. I totally get that feeling of frustration that with all the developments and advances in mental health understanding and societal acceptances we will seem to know so little and frankly, care so little about the causes and treatments for chronic serious mental health disorders like schizophrenia, psychosis etc.

I have to say the care my brother gets from his GP is actually excellent and I do think the programme of widening access to talking therapies and general societal willingness/ promotion of care for (for want of a better word) mild mental illnesses is a great thing for the population - but like others have said 6 weeks of CBT or a nice chat over tea does very little for people like my brother with lifelong enduring illnesses. On the (sadly way too many) times he's ended up in acute crisis and hospitalised that care has also been very good, like OP I just regret that there isn't more in the middle. The thing I find most frustrating is that as his carer I can tell immediately when he's deteriorating/ stopped his meds / going hypo-manic, just from his speech patterns and expressions even before any behavioural changes - but I am totally powerless to do anything, I can't force him to take his medication (and nor can the nurses/doctor), there's very little by way of services to help someone like him even if he was willing (which mostly by this stage he isn't, he's either manic and feeling on top of the world or paranoid and deeply fearful of any healthcare or authority) and essentially no-one can intervene until he deteriorates to the point of being a very obvious danger to himself and those around him. My greatest fear is that one day he'll come to serious harm or hurt someone else (he's rarely violent thank god but extremely impulsive with no self-control whatsoever) and if I will have seen it coming for days/weeks and been unable to do anything 😢 I don't know what the answer is, I wouldn't want to live in a world where we force people like him into accepting compulsory care against their will or institutionalise them like the bad old days. But more research and funding would be a start!

As to why it isn't spoken about more - I think the sad fact of human nature is that we're more drawn to publicly supporting causes and want to take action on things that are emotionally appealing to us, e.g. that we are able to emphasise with because if affects 'people like us', and also that have easy solutions. It's why for instance cancer has such good marketing compared to say stroke or heart disease (sounds awful but that is what it is at the end of the day) - cancer sufferers are often children or attractive young people (on the telly anyway) and there's the enticing possibility of an almost magic cure and total recovery - compared to diseases that mostly affect older people and where treatment is either preventative or symptom management. Sadly I would chronic serious mental health illness just aren't marketable in that way, having witnessed my brother and others mid episode it's very very frightening - not just the possibility of violence or harm to bystanders but just seeing someone lose themselves so entirely (the meaning of the expression 'out of your mind' really hits you) and in such profound distress is really, really upsetting. And then when he's well he just seems like a basically ordinary person so again nothing to see (other than the general wreckage of his life, finances etc. caused by the acute episode of course). Like others have said, deeply unglamorous. You can see why it's not something most people really want to engage with really despite it being relatively common...

both DS and DB are schizophrenic.

It is a most distressing condition, and for large parts of their lives they exist in a living hell.

I've always felt there are two broad types of Mental Illness - psychosis and neurosis.

I think this is the crux of it.

People like to talk about the mental health problems that can be fixed....by people. With a bit of understanding, checking in, support, maybe therapy. And that's great.

There's no point in having cosy feelgood chats with someone who needs professional psychiatric help and medication.

Definitely needs more education about this. I am pretty sure it triggered/worsened my ex's paranoid delusional disorder (not sure if it's the same as schizophrenia but that's what was written on his diagnosis papers). He had smoked on or off since his teens and was diagnosed bpd, then later on got prescribed cannabis for back pain by a private doctor and everything got much much worse and he was in and out of the psych ward for the last few years of his life.

Thanks for bringing up this topic, OP. It's certainly something that ends up brushed aside in all the modern 'mental health' chat, which I agree is mainly focused on the worried well or people with mild anxiety or depression. And I guess people don't like to talk about the link to drugs triggering it because they're worried about sounding uncool, God forbid.

I have an older family friend who was diagnosed with schizophrenia after an episode at university in the nineties. She has had a pretty good life, married and raised three kids. Never worked but has a creative sideline that clearly brings her joy. I think her husband has been the main reason why she has managed so well - they have a close and loving relationship and I am sure he has advocated for her on many occasions, to get her sectioned if she needed it, or talk her into taking her medication when she lost the knowledge of why she needed it.

It's cruel that this condition robs people of insight into the help they need, just when they meed it most. I hate how the medical system often leaves them to struggle right up until the point they are obviously cripplingly unwell and only then steps in. There has to be some sort of middle ground. Perhaps it is because people don't want to think of self-awareness as a flickering thing, sometimes there sometimes not. Our society is obsessed with perfect independence and maybe would rather leave someone to struggle for too long to give them the benefit of the doubt, than reach out to help them if they have lost capacity temporarily.

I don't know what the answer is. I'm glad my friend is not stuck in an institution as she would have been generations ago, but I do worry for her if her husband gets ill/becomes disabled, and what will happen if she is at the mercy of an overstretched community mental health team who won't notice her and help her the way he does.

I have 2 boys with adhd and autism. I’ve always counselled them to stay well away from weed due to this link.

I smoked weed, recreationally, as a young adult but have kept it from my kids as I don’t want to think I condone it in any way.

Fortunately they gave the type of autism that gives the serious discomfort about rule breaking.

This exactly and beautifully put.

OP, I don't have PS but I have bipolar and experience psychosis when I'm unwell, sectioned multiple times. I strongly agree with you about bipolar being slightly more acceptable and an so sorry for your negative experiences.

Like others, I get so frustrated with the medicalisation of emotions. SMI is a completely different kettle of fish.

I do work but struggle. I've got a very supportive manager but do worry about the impact on my career. I'm aligned with a professional body and live in fear of them finding out.

Don't get me started with "It's OK not to be OK". For people living with SMI, disclosure can carry a lot of risks.

I do not recommend this to ANYONE, but I choose not to disclose my condition to medical professionals other than my GP. I can guarantee my broken leg will be thought secondary to it.

Thing is I don’t believe it can’t be fixed all the time. If you catch it early enough the odds are not that bad! It’s not a given and it’s still 50/50. But without really fast help (and I am talking hours/ days) that’s it really. Odds of a full recovery/ permanent remission are quite slim.

And therapy does work too. I had CBT and therapy; they made a difference.

It’s also interesting the rates of function across the globe. Lots of people in India have schizophrenia with very good function. It seems to be that cultures more spiritually tuned seem to have good psychosis rather than scary psychosis. Yoga weirdly has also had good results.

Also in the scandi countries they are trialling not medicating after the initial acute period (weeks or months as opposed the years standard in NHS). The long term hasn’t been done but the idea is that it gives a chance to those who might be the lucky ones to actually fully recover. That one’s a bit of a paradox though. For some people that will make things worse. So it’s a gamble. But it worked for me.

I wouldnt have known about the medication thing if it wasn’t for a close friend who does research in evolutionary psychiatry in Switzerland. It’s interesting because their newest theories is that schizophrenia is actually an evolutionary trait. A highly valued one at that which is why it’s not been bred out by darwin evolution. They have studied tribes and the ratio 1:100 is roughly equal to the number of shaman to tribe members. The difference being these shamans were taught by elder shaman and guided through their schizophrenia journey to it being embraced and spiritual. Ie. A good psychosis rather than scary psychosis.

It is so fasincating. We do have a lot to learn!

I think people on this thread are significantly minimising how bad depression and anxiety disorder can be I'm diagnosed with bpd and although its had a significant impact on my life I would still say my anxiety disorder has definitely been worse at times. I didn't leave the house for 2 years because of anxiety my bpd never did that to me

OP I have psychosis in my family (not yet diagnosed schizophrenia but possible if it happens again) .

I think the simple answer is the same reason people in psychosis are so vulnerable- active psychosis is too strange for the general public to deal with.

How can a healthy brain process that someone who is not being killed, thinks people are coming to kill them?

how can a healthy brain process someone telling you there are patterns in the number plates of the cars they’ve seen?

how can a normal brain process someone running away and hiding in a bin store because their family put witch craft on them?

we can conceptually deal with these ideas. But we can not relate to the reality of someone with a broken brain having delusions. Many people can’t even accept that the person is question truly believes the delusions are real.

what a broken brain can do is very uncomfortable. I don’t think people can relate to it in any way. Human instinct is to freeze or flight from those people.

it’s tragic. I want to cry when I read DM idiots claiming PS is an excuse.

Is bipolar not a divergence? Sorry OP totally with you and don’t want to derail the trail. My point is I think every condition eventually gets its time in the sun, at even the more know ones are subject to misconceptions

It’s not a race to the bottom. And type 1 bipolar is a psychotic illness. I have it. It is every bit as stigmatising. Some countries won’t even give me a visa. I think a lot of people on this thread don’t know what bipolar disorder actually is. Likely think it’s “I’m so happy now I’m sad now angry” which is actually borderline personality disorder. Also extremely stigmatised. As is anything that actively prevents you using basic social skills to “engage” with help when your brain catches metaphorical fire. And feck off with the little head-tilt “I’m sorry you feel this way” nonsense. Just begone with it.

I am bipolar and I agree. I think as bipolar has some commonality with how others experience mental wellbeing it can be easier for people to relate especially with the moderate depression and hypomania but I do agree with @MiraculousLadybug there is a lot misconceptions about bipolar especially type 1.

There are two aspects of bipolar that people seem to struggle with and that is the idea that you will have repeated episodes, even if you take your meds and eat well and offer up your soul to the north star or what ever else is in the media to help with mental wellbeing. I remember one mental health awareness day at work where we had a coffee morning talking about our experiences. I mentioned that often I can moderate my mood by listening to music opposite to my mood. A little while later I mentioned that I had a difficult episode where I was getting messages in the music I was listening too and someone pulled me up on the fact that the two stories were the contradicted each other. They had missed that they were two separate episodes as to them mental illness is a one of things. The psychosis I think is just hard for people to grasp. I almost think people are going to think "yeah but surely you really knew that it wasn't real".

The other is the psychosis. When I start talking about severe depression, mixed episodes and mania that's when I very careful pick who I talk too.

I was admitted to hospital in the summer due to extreme fatigue in pregnancy. The admitting midwives classed me as having an acute mental health episode and needed an urgent psychiatric assessment. I had seen my psychiatrist and Obstetrician a few days earlier as my physical health was declining and thankfully they got the hospital back on the right track. They were originally planning to change all my medications and looking at an mbu admission. I was diagnosed with severe ICP (Cholestasis) and was borderline for HELLP an unusual form of preeclampsia. They had to put me on medication to treat these and induce me as the Cholestasis was putting me at risk of a still birth and if I did develop HELLP I could have got seriously unwell. I dread to think what might have happened if the consultants hadn't advocated for me. My psychiatrist said she has had patients where they have gotten unwell because physical issues have been ignored and put down to mental health.

I didn’t get diagnosed with bipolar until I was 50 but I can remember my first episode at 19. I take antipsychotics to control my symptoms. The unmedicated years nearly destroyed my life and the lives of my family.

I am lucky to have found a medication which keeps me well but it does make me a bit boring. However, after the chaos of life between 19 and 50 I will happily take that!

I am not embarrassed of having bipolar but I am mortified at some of my past behaviour, particularly when in the throes of hypermania.

The same thing's happened with autism. I'd give you some brilliant links, but need to take my mental health to bed before attempting anything organised 🙄 A renowned expert on autism was hounded out of a high-level conference on autism by all the autistic spokespeople who function well enough to publish research, organise campaigns and speak at large conferences.

Last I heard, he was struggling to hold onto his career as his reputation was being systematically trashed. Funding is moving from the silent, severely affected 50% to the 50% who can effectively advocate for themselves. It's very sad.

Every so often, I try and gently raise awareness about things that often affect daily life, such as transient psychotic episodes. I'm always met with outrage at the mere suggestion it happens often! The fear's incredible - people will prefer any other explanation, no matter how bizarre.

I love the potted user experience stories on the Mind website. Wonder if they could make a set of video shorts along those lines?

My sister has bi polar. It is very difficult to live with someone with this condition. Her children ended up living with their grandparents in the end. I don't think people are wrong to assume you could be difficult. It's very much part of the illness, sadly. Obviously when medication is under control it is a much more calm place.

And this comment is why I'm not "out" about having bipolar. This is why I don't tell doctors I have it.

You don't speak for me about what is "very much part of the illness". It might be your relative's experience but you can't extrapolate your findings.

Nothing like a sweeping assumption about what bipolar "looks like" to lose friends, further ignorance and derail a career.

This sounds very difficult OP. I hope you don’t mind me hijacking your thread but it seems a lot of people on here might be able to help someone I know who I’m certain has this type of condition.

Without giving too many details they have had what I assume are referred to as ‘episodes’ - in one instance they tried to seriously hurt someone close to them, in another they claim to have been involved in a series of events which physically are not possible due to timings etc but they believe this 100%, to the point of having a tattoo related to what ‘happened’ and other mementoes. They have been seen by medical and legal professionals at various times in relation to these incidents but nobody has ever diagnosed them.

My question is, does this sound like the same type of disorder referred to in this thread and if so how can I help them? They refuse to take medication or discuss with a professional again due to not having been believed previously.

Could be, it's quite hard to say. When in psychosis people do believe all sorts of things which aren't rationally/ logically true, it can take all sorts of forms from auditory and visual hallucinations (seeing and/or hearing or even physically feeling things or voices which aren't there), to paranoia/ persecution delusions (a common one is believing the police or FBI or other shadowy forces are out to get you) to delusions of grandeur (believing you are are god or have supernatural powers). My brother starts to believe there are signs and secret messages in pictures and adverts on the telly and that announcements / departure boards on public transport are sending him signals/codes.

The thing about these 'episodes' or experiences if you will are that they are very, very real to the person experiencing them, and no amount of rationalisation or denial by loved ones will change that (in fact telling the person that what they're experiencing is untrue or not real can be very distressing for them). After the episode is over, sometimes they can't remember the delusions/hallucinations, sometimes they can and then it's very hard - the rational part of them knows or suspects the experiences were part of an illness but the feelings and memories are so vividly real it's kind of impossible to reconcile and again I think it's often quite upsetting. As a loved one/carer of someone who suffers with this horrible illness I quite often want to talk to him about his delusions but generally that's me processing stuff rather than him so I don't push it against his will.

What can you do, it depends a bit on what triggers the episodes, with my brother it's depressive psychosis so keeping his underlying depression under control, the right mix of medications and avoiding known triggers like excessive stress or anxiety. Basic mental health self-care like practicing mindfulness, getting enough sleep, eating well, socialising, avoiding alcohol and drugs, although in many ways totally inadequate for care of this complex illness, as this thread has shown, are also actually really important in keeping him well (no good once he's in an episode, only anti-psychotics work then). So I guess generally being there for your relative, not challenging their version of the past unless it's actively hurtful/damaging to you personally, providing social/practical/emotional help, keeping an eye and encouraging them to seek crisis help if you see early warning signs of an episode (look up hypo-mania symptoms as they are quite useful indicators for all sorts of psychotic illnesses) - and get them to emergency care (a&e or crisis team) if they are a danger to themselves and others is what I'd recommend.

I pressed the wrong button!! Yanbu, its a difficult and misunderstood condition, best wishes x