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.

What they mean by 'mental illness' is usually just emotional discomfort. They're also mysteriously well enough and have enough energy to hassle the medical profession for help.

I think if you have a friend or family member with schizophrenia or bipolar you are probably well informed. What would you like people to know? Everyone is individual and someone might get the help they need and thrive and others have a tough life.

I agree that the dangers around weed etc are massively underplayed.

Unfortunately the number of people talking about very mild “mental health” when they mean poor mental health,( we all have mental health, mine is good,) means that people seem to forget that there’s lots of much more serious conditions which are lifelong and very disabling. My cleaner at work has schizophrenia with court mandated management daily, yet people say to him “I’ve got mental health, when they in reality have mild anxiety, which I’m not saying should be dismissed but it’s not the same.

My brother has schizophrenia, also thought to be triggered by smoking weed as a teenager. It's a horrible illness. He's such a good hearted, kind man but some of the things he's done while he's been psychotic have been almost unbelievable. He is unable to work, he would never be able to hold a job down, although I know he would like to.

I think that social media has made a lot of people feel that depression and anxiety are now things everyone has rather than actual mental illnesses. Some people almost wear then as a badge of honour. Schizophrenia and similar illnesses are just too messy and inconvenient to be seen in the same way. I'm sorry you're suffering with it OP, and thank you for starting this thread.

Hi @NightTerrieri have Schizoaffective which is a mixture of schizophrenia and bipolar. Also autism & epilepsy. Only literally 2 of my close friends know the truth due to the stigma, also my manager at my part time job knows (her daughter is autistic and EUPD so she’s understanding). I get PIP and no one except immediate family know that although others do suspect because of things they’ve said.
To other friends and work colleagues I imply I have bipolar as it’s slightly more ‘acceptable’ than an illness beginning with ‘schizo..’ and I admit to the epilepsy now. But I don’t mention the autism either.
I do feel different to others although I’ve been told that I mask very well.

I have a family member who has recently been sectioned with severe psychosis / schizophrenia . It's a dreadful disease and I think underfunded.

My heart goes out to anyone who suffers from it or has family who do.

💐 to all

This. My dh has had psychotic episodes and this is certainly true for both of us.
I am so thankful we have a good GP surgery and nurse practitioner at the CMHT.

I have CPTSD, PTSD and a severe dissociative disorder. I don't work because it's unmanageable but otherwise I present very well from the outside. When you or other people saw me out or said good morning you would probably think I was fine and there was nothing wrong with me at all - if I even mentioned anything you might think 'yeah you and everyone'. But the stress of work is more than I can manage and when I have tried I have ended up becoming extremely unwell and leaving without notice.

Then there are lots of people who believe they have dissociative disorders, or fake them online, and that leads to many people and even clinicians not believing in the disorders at all.

Basically there are different kinds of stigma - people who still don't like to talk about overt SMI and then people who think that unless you can see it from twenty paces it doesn't exist.

I'm so pleased he's got good support. Unfortunately there seems to be a big gap for some people. They'll have an episode which would have devastating consequences, but by the time MH professionals see them they present as 'normal' again.
Wishing you both the best x

Thanks for posting this.
Unfortunately, I think Schizophrenia is still stigmatized due to being unglamorous, not fixable, and too much for the average person to get their head around. I would welcome more education on it, also more information surrounding the link between it, and smoking weed.
I used to consider myself fairly well educated, in regards to mental health. I’ve also been diagnosed with various conditions.
I think people think of things like, Clinical Depression, or GAD, etc, as something regular people go through. I know I was incredibly naive about psychosis in general, until I experienced it!
My psychotic episodes were due to experience Menopause-associated psychosis. Thankfully, it’s been almost a year since the last one.

@NightTerrier For you as well as my post above. 💐💐. I know from personal experience how debilitating and distressing severe mental health conditions can be. I'm glad you are taking all your medications , the alternative is worse and I truly wish you all the best. I understand what you are saying.

I'm the same. Only a few people including my partner and family and two close friends know of my schizophrenia diagnosis.

For some reason I'm just as cagey about disclosing my autism.

I get the full rate of PIP at the moment and only my partner knows about that. I haven't told anyone else because people judge.

I'd love to be able to go back to work. It's so annoying. I qualified as a graphic designer in my late 20s and was doing that for a living for a few years, then I had a really bad episode of psychosis and I've never returned to my previous level of functioning. The medication seriously dulls my creativity, I can't even read a book these days.

I'm deskilled now and don't have the money to retrain in the Adobe software and I doubt that I'd be abe to do that line of work anymore. Stress really aggravates my symptoms.

It is also a feminist issue. The link between psychosis and menopause is grossly under researched. I am not doing a good job of explaining this, but nobody tells newly divorced women that they are pretty vulnerable. Psychotic episode is not discussed in terms of extreme anxiety and sleep issues, it’s just clumped with schizophrenic-type illness and sort of mystified. Another aspect that is under discussed and dismissed is acute confusional migraine. my family member (who is actually a psychiatrist) thought she was having a stroke.It started a whole cascade of delusional thinking which, in retrospect, she believes was linked to hormonal imbalances in perimenopause.

My brother has PS and depression. His medication just about keeps him on an even keel, but only just.
The public focus on mental health has inevitably deteriorated into just another pop culture artefact. Its not uncommon now to see (often self diagnosed or just highly exaggerated) mental health issues used for sympathy clout or as an excuse for poor behaviour, and the idea that everyone should be oh so supportive and understanding all the time never addresses the fact that some people with severe mental health problems can be absolutely horrible and draining to be around, for instance, my own brother can be very verbally abusive and tends to have poor personal hygiene. All the focus is on the softer, more functional side, so the intractably difficult and messy side just gets swept further under the carpet. You can’t make tearful and aesthetically pleasing TikTok’s about thinking MI5 are out to get you, while sticking pins in yourself.

I have a relative currently sectioned with schizophrenia, thought to be triggered by drug misuse in their early 20s. They had a lot of promise but it’s detailed their entire life. It’s very sad.

I think you're right, OP.

When individuals, organisations and celebrities talk about "raising awareness of Mental Health" most of the time they are referring to Anxiety and Depression. Whilst it's great that there is a better understanding of these conditions, other mental illnesses, in particular psychotic illnesses and personality disorders are still widely misunderstood.

Like many young women at that time, I was mis-diagnosed with a highly stigmatising mental health condition as a teenager only to be told later in life that this was totally incorrect and that my difficulties were due to Autism. The response I get when I advocate for myself as an Autistic person is very different to how I was treated by HCP's when I had my previous diagnosis.

Because it's messy and not at all pretty or glamorous, and it has unavoidable consequences for everyone in the person's life. You can't fake your way through life with it (being medicated for it obviously isn't faking it). Anyone who's lived with someone with a psychotic illness knows there's nothing attention-seeking about it. It has teh capacity to be ugly and massively negatively impactful. The opposite of "a touch of the vapours" or being "of a nervous disposition".

There’s a flip side to this as well. I was put into early menopause due to chemo and having to have my ovaries removed (I’m a BRCA 2 fault carrier). My mental health improved enormously afterwards, and thanks to issues with HRT I now know that I have quite severe progesterone intolerance. I suffered for years with PMT, PMS, couldn’t take the pill because I needed ever stronger doses to keep it working, depression during pregnancy, and major post natal depression with suicidal ideation. I’m saner now than I have been since I was about 12.
Progesterone is not my friend.

Thanks. I couldn’t agree more in regards to the link between Menopause and psychosis. Practically nonexistent research. It’s only recently I’ve begun to see those two things being openly linked.

I have bipolar disorder. I would agree that it is slightly more acceptable due to having famous spokespeople. Also because it is often episodic even though still symptomatic, there is more opportunity to communicate and educate.

I have been in hospital on many occasions and have thought schizophrenia was even less socially understood.

I watched the documentary about Heston Blumenthal and bipolar and, in this, he contradicted my thoughts in an interview with a health data expert by claiming a lot more financial investment went into researching schizophrenia.

I am heavily medicated and have accepted this now (at the age of almost 60). I think in both illnesses the side effects of the drugs are horrific. If blood pressure medication caused comparable effects, vast amounts of financial resources would be spent finding alternatives. But that is just the nature of medicine.

Mental illness acceptance is a nice idea until it inconveniences people. It isn't pleasant, it's horrible. I think there is a vague hierarchy of illnesses that are tolerable for others. Full blown psychotic mania and schizophrenia don't figure highly on this scale.

I also want to add that there is no research on being the adult child (or any child) of a psychotic parent. I grew up with my DF's psychotic behaviours and am only just healthy myself. It has taken a lot of self-educating to grow out of ideas of the devil following me, being told that people are evil/jealous/out to get me, warding off suspicious thinking, trying to keep myself clean (verging on OCD) and trying to ward off weird voices and repetitive phone calls from my psychotic parent. If only someone had sat me down and told me it wasn't ME but the genes I have inherited and the fucking dire conditions I was subjected to through poverty and life with a psychotic parent.

Your right OP!

I have had psychosis and been sectioned and I don’t tell anyone really (close friends and family know).

I do think this needs a nationwide campaign as a matter of urgency.

I was so lucky. My family somehow managed to get me sectioned and nhs threw the kitchen sink at me. My psychiatrist said I think you have schizophrenia but I am not going to put that on your record. She said ‘I shouldn’t be here’ - ie. Didn’t fit the typical stereotypes and risk factors - being upper middle class, white, a woman. Even though I had my first episode bang on 27. Typical age for schizophrenia in women.

It’s now nearly a decade on. I am not medicated and so far haven’t had a positive relapse. Sometimes I have negative symptoms but is that just me being me. It’s hard to know and I do trip myself out sometimes thinking do I have it, did I have it, can I get it again?

I have spoken to quite a few people in obscure corners of the internet (as mental health professionals are quite careful what they say to your face); and it fascinates me how little is still known about this illness. It fascinates me that it is seen as uncurable yet 25% of people with a diagnosis make a full functional recovery from psychosis and live a normal life. And part of me also thinks about all the people at the pre - diagnosis first episode psychosis level. How many of them were ‘cured’ before developing permanent schizophrenia. I am sure they also exist. But how can you prove a negative.

But yes in short I think we need a national campaign about first episode psychosis and getting rapid help. Every couple of weeks on here I see a post from a family member who has a relative who is clearly having a psychotic episode. But they can’t see it. And every hour let alone day counts! It should be like the campaigns we had for stroke awareness. On tv, on tubes, on radio. That’s going to save a lot of lives. And hopefully reduce stigma.

It's a very good point and I don't know the answer.

The only think I can think of is the amount of people I know with either anxiety or depression is far greater than those I know with schziophrenia or bipolar.

I only know 2 people ever who suffer from schziophrenia and even then their experiences are very different. One seems to be fortunate enough to manage it relatively well with medication. The other seems to have never found something that helps and spends a lot of time as an in patient. One is someone I knew in school and the other a former neighbour so I really only know the basics.

I know no one with bipolar that I am aware of.

Also just realised I've had mental health training with both work and part of charity work and both only covered anxiety and depression. (Work with neither is mental health related).

Not sure if you've an interested in doing an AMA but I'd read it as it's something I know very little about. I would even know how to recognise it whereas depression, stroke, heart attach etc, they are all well documented and have lots of awareness campaigns.

statistically speaking, schizophrenia is one of the less common mental health illnesses i - so makes sense not talked about to the same (very high!) extent of chatter about other types.