It's National Schizophrenia Awareness Day 2021 - AMA!

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The_Lonely_Goatherd
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Hi everyone

Today is National Schizophrenia Awareness Day 2021 in the UK! I don't have a diagnosis of schizophrenia, but schizoaffective disorder (basically schizophrenia and bipolar combined) but, afaik, there is no such day for schizoaffective disorder

So, in the spirit of today (and partially to avoid doing PhD work :ninja: ), feel free to Ask Me Anything in this thread about:

- what it's like hearing voices that others can't

- my experiences of other symptoms of schizophrenic symptoms (e.g. paranoia/paranoid delusions; other types of delusions; other types of hallucinations)

- what it's like being an outpatient for 11 years

- my experiences of therapy and how this has helped/hindered my "recovery"

- how my experiences intersect with my religious beliefs, and what other people's reactions have been to my religious explanations of my experiences :jebus:

Curiosity and honest/bold questions regarding any of the above are extremely welcome. Please think about how you word things though - questions that are deliberately discriminatory or worded extremely rudely will be reported :security:

Please bear in mind I am in a hypomanic episode and there will be lots of typos/wods missing, and my answers may not be as lucid as usual

TLG :cool:
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Anonymous #1
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What encouraged you to seek help? Was it a slow building process or like a specific event? (Or did someone make you get help?)

Were you (mis)diagnosed with Schizophrenia or Bipolar before receiving a diagnosis of Schizoaffective disorder?
(sorry if neither of these questions were on the list of ones you'd answer)

What's the most helpful thing a friend/someone who lived with you could do if you were having a paranoid episode? Or would nothing be best. (sorry if that's the wrong word)
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Noodlzzz
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- what arg were you diagnosed?
- Where you diagnosed with anything else before the sza?
- are there any films that close to home? (for me Truman show and beautiful mind massive triggers)

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The_Lonely_Goatherd
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(Original post by Anonymous)
What encouraged you to seek help? Was it a slow building process or like a specific event? (Or did someone make you get help?)

Were you (mis)diagnosed with Schizophrenia or Bipolar before receiving a diagnosis of Schizoaffective disorder?
(sorry if neither of these questions were on the list of ones you'd answer)

What's the most helpful thing a friend/someone who lived with you could do if you were having a paranoid episode? Or would nothing be best. (sorry if that's the wrong word)
Hiya, thanks for these great questions!

I mentioned in passing to a welfare tutor at uni (during my third year of undergrad, so aged 20-21) about my voices and what they were saying and she was like :lolwut: :erm: and was then like "I don't experience anything like that", which confused me, coz I thought everyone's brain worked like this She asked me to go see my GP and even though I felt she was overreacting, I did so over the Christmas holidays

Prior to receiving my diagnosis of schizoaffective disorder (which I had to fight for, tbh: my psychiatrist was not forthcoming at all about what he thought was going on), I had diagnoses of:

- mild depression and anxiety (lol) before my big breakdown at Oxford
- severe depression with 'psychotic' features, after my big breakdown at Oxford

Clinicians weren't willing to believe/accept that I'd had a major psychotic episode until I ended up in another really long one and they had the chance to see it for themselves

People experiencing with psychosis find different things helpful but for me, when I'm paranoid, I don't want someone pussy-footing around. I need someone to be like "this isn't really happening, it's "just" the paranoia, you will feel much better soon but let's talk about how to manage your thoughts/feelings until you feel better". I'd rather someone tell me it's not real :yes:
(Original post by Noodlzzz)
- what arg were you diagnosed?
- Where you diagnosed with anything else before the sza?
- are there any films that close to home? (for me Truman show and beautiful mind massive triggers)

:hi:

I've answered the second one to the person above Currently diagnosed with schizoaffective disorder, mixed type (though my psych letters keep listing it as 'depressive type', which is the former diagnosis. Should probably chase that up with them, lol)

I've never seen the film Beautiful Mind and think I should probs steer clear tbh I've not see The Truman Show film either but a friend took me to see a play of it and I came out like "oops it's me meep" and felt kinda confused by it all

For me the film that really hits closest to home, even though there's no psychosis in it, is the film adapation of The History Boys
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The_Lonely_Goatherd
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BUMP :lurk:
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Anonymous #1
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more questions because this thread is empty
1. How's your experience with the mental health services/team been, and has it varied depending on symptoms?
2. I've heard lots of very mixed, and largely negative reports of secondary services. So, if there was one thing you could change about how MH services in the NHS functions, what would it be?

3. (i see you're doing a phd, damn, must have been in education for ages) How have Uni supported you? Is there anything they did that was good? Or conversely were they bad at supporting you during your studies?
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The_Lonely_Goatherd
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(Original post by Anonymous)
more questions because this thread is empty
1. How's your experience with the mental health services/team been, and has it varied depending on symptoms?
2. I've heard lots of very mixed, and largely negative reports of secondary services. So, if there was one thing you could change about how MH services in the NHS functions, what would it be?

3. (i see you're doing a phd, damn, must have been in education for ages) How have Uni supported you? Is there anything they did that was good? Or conversely were they bad at supporting you during your studies?
Do ask away: no such thing as too many questions on this thread

1. I've been lucky with mental health services for the most part, in that I haven't had the terrible experiences/invalidation that a lot of people suffer from I've also never been inpatient, or even gone to A&E for mental health, which I think has shielded me from a lot of the bad experiences.

I do feel I have problems that are recurring points with clinicians, even when my psychiatrist or community psychiatric nurse (CPN) changes, though. I think my intelligence and insight work against me a lot of the time. I feel I am low priority within my mental health hospital because I am articulate, more stable than some of the other patients in the waiting rooms, and I am 85% of the time able to say "the voices are saying X" rather than "X is true", if you see the difference? But that means that I am taken less seriously, in that clinicians don't realise that my life is very painful

2. I think waiting times to access mental health services shouldn't be a postcode lottery. Young Minds have a campaign atm for early intervention-type "hubs" for any emerging mental health needs. Their campaign is obviously for young people but if this could be expanded to adults too, it could provide more equity? :moon:

3. Yes haha, been studying on-and-off at universities since 2007 :shakecane: My first uni were atrocious for the most part :mad: My Masters uni were pretty good. Current uni has been variable: some amazing staff over the years but the disability office is a revolving door in that staff are always leaving , due to the high pressure/crap working environment. I have attachment issues, so I find the staff turnover hugely distressing
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Sabertooth
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(Original post by The_Lonely_Goatherd)
Hi everyone

Today is National Schizophrenia Awareness Day 2021 in the UK! I don't have a diagnosis of schizophrenia, but schizoaffective disorder (basically schizophrenia and bipolar combined) but, afaik, there is no such day for schizoaffective disorder

So, in the spirit of today (and partially to avoid doing PhD work :ninja: ), feel free to Ask Me Anything in this thread about:

- what it's like hearing voices that others can't

- my experiences of other symptoms of schizophrenic symptoms (e.g. paranoia/paranoid delusions; other types of delusions; other types of hallucinations)

- what it's like being an outpatient for 11 years

- my experiences of therapy and how this has helped/hindered my "recovery"

- how my experiences intersect with my religious beliefs, and what other people's reactions have been to my religious explanations of my experiences :jebus:

Curiosity and honest/bold questions regarding any of the above are extremely welcome. Please think about how you word things though - questions that are deliberately discriminatory or worded extremely rudely will be reported :security:

Please bear in mind I am in a hypomanic episode and there will be lots of typos/wods missing, and my answers may not be as lucid as usual

TLG :cool:
you're so brave to put this on your Facebook status. I saw it just now and wish I could be as open as you. Very very few people know about my diagnosis and I wish I could change that.

Schizophrenia diagnosis here if anyone has questions! :hello:
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Anonymous #1
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for either of you!
(Specifically before you got medicated/diagnosed, but after too) did your schizophrenic symptoms (I'm referring to pyschosis here mostly I guess) remain constant once they appeared, or would you have periods where you were more "fine" and it would leave and come back?
Related- did you ever think that you were making it up as a result, if your symptoms fluctuated?
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Anonymous #1
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Sabertooth, also if you don't mind could I reask this question to you?
What's the most helpful thing a friend/someone who lived with you could do if you were having a paranoid episode? Or would nothing be best? (obviously you can't speak for everyone, I just find it interesting to see the range of responses)
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Sabertooth
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(Original post by Anonymous)
for either of you!
(Specifically before you got medicated/diagnosed, but after too) did your schizophrenic symptoms (I'm referring to pyschosis here mostly I guess) remain constant once they appeared, or would you have periods where you were more "fine" and it would leave and come back?
Related- did you ever think that you were making it up as a result, if your symptoms fluctuated?
My symptoms have fluctuated quite a lot over the years. I've had periods of normalcy but before hitting on the right meds I was way worse and there were very few "fine" periods. I do kind of feel like I've made everything up - most evenings I struggle to force myself to take my meds because I feel like I don't need them.
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The_Lonely_Goatherd
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(Original post by Sabertooth)
you're so brave to put this on your Facebook status. I saw it just now and wish I could be as open as you. Very very few people know about my diagnosis and I wish I could change that.

Schizophrenia diagnosis here if anyone has questions! :hello:
Awww thanks Less brave than I seem - Limited Profile people (aka the whole Sri Lankan community) can't see it :innocent:
(Original post by Anonymous)
for either of you!
(Specifically before you got medicated/diagnosed, but after too) did your schizophrenic symptoms (I'm referring to pyschosis here mostly I guess) remain constant once they appeared, or would you have periods where you were more "fine" and it would leave and come back?
Related- did you ever think that you were making it up as a result, if your symptoms fluctuated?
Pre-meds, I heard voices pretty much everyday since around the age of 8-9 (had some one-off experiences aged 5), so it was all very consistent for me. I don't consider voices pre-20 to have been psychosis in my case, but I had some non-voices experiences as a child which, looking back, I'm like "oh hai there, psychosis :nothing: ". Like I was 8 when Princess Diana died and I remember crying so much because I thought it was all my fault

Post-developing psychosis, the voices do occasionally go away on very rare occasions but only for a few weeks usually. Interestingly the voices have been SO much more manageable since the pandemic started :holmes: :beard: :iiam:

When my symptoms aren't too severe, I do feel like I'm making things up, yeah
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Sabertooth
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(Original post by Anonymous)
Sabertooth, also if you don't mind could I reask this question to you?
What's the most helpful thing a friend/someone who lived with you could do if you were having a paranoid episode? Or would nothing be best? (obviously you can't speak for everyone, I just find it interesting to see the range of responses)
I live with my spouse and honestly the thing that helps most is a hug and listening to me. I get paranoid thoughts and just being able to tell someone about my ideas without them judging is the most helpful thing. Last time I was in hospital I ranted at a nurse for several hours (we're talking until like 3am ) and she didn't judge me she asked questions and was willing to listen to me and I didn't feel so overwhelmed and alone.
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artful_lounger
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What kind(s) of therapy do you have/do? If you've done multiple types do you think any particular kind has been more/less helpful for you, or is it dependent more on the person delivering it? Have you only had therapy through the NHS, or have you done it through your uni as well?

The above is really just for general curiosity on my part so I understand if you don't want to talk as much about some/any of that I've only had CBT and then "mentoring" (which is kind of talking-ish therapy I guess?) through one of my former unis which I found a bit of a mixed bag (CBT was excruciating for me, I used to refer to it as "cognitive behavioural torture"...although I think it did/does help me, it was/is hard work The talking therapy felt kind of like a waste of time but maybe just having some kind of consistent appointment was at the time good for me).
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Interea
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(Original post by The_Lonely_Goatherd)
Hi everyone

Today is National Schizophrenia Awareness Day 2021 in the UK! I don't have a diagnosis of schizophrenia, but schizoaffective disorder (basically schizophrenia and bipolar combined) but, afaik, there is no such day for schizoaffective disorder

So, in the spirit of today (and partially to avoid doing PhD work :ninja: ), feel free to Ask Me Anything in this thread about:

- what it's like hearing voices that others can't

- my experiences of other symptoms of schizophrenic symptoms (e.g. paranoia/paranoid delusions; other types of delusions; other types of hallucinations)

- what it's like being an outpatient for 11 years

- my experiences of therapy and how this has helped/hindered my "recovery"

- how my experiences intersect with my religious beliefs, and what other people's reactions have been to my religious explanations of my experiences :jebus:

Curiosity and honest/bold questions regarding any of the above are extremely welcome. Please think about how you word things though - questions that are deliberately discriminatory or worded extremely rudely will be reported :security:

Please bear in mind I am in a hypomanic episode and there will be lots of typos/wods missing, and my answers may not be as lucid as usual

TLG :cool:
I'd be interested in hearing more about your last bullet point there, but I don't really have a specific question It's just not something I've heard discussed before as I don't really know anyone religious, so I'm interested in a new perspective if you're up for sharing your experiences
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The_Lonely_Goatherd
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(Original post by artful_lounger)
What kind(s) of therapy do you have/do? If you've done multiple types do you think any particular kind has been more/less helpful for you, or is it dependent more on the person delivering it? Have you only had therapy through the NHS, or have you done it through your uni as well?

The above is really just for general curiosity on my part so I understand if you don't want to talk as much about some/any of that I've only had CBT and then "mentoring" (which is kind of talking-ish therapy I guess?) through one of my former unis which I found a bit of a mixed bag (CBT was excruciating for me, I used to refer to it as "cognitive behavioural torture"...although I think it did/does help me, it was/is hard work The talking therapy felt kind of like a waste of time but maybe just having some kind of consistent appointment was at the time good for me).
I've had (in chronological order):

- psychodynamic counselling at Oxford for one academic year. Verdict = :mad:

- NHS CBT for 9 months in 2011. Verdict =

- NHS ACT (Acceptance and Commitment Therapy) for 9 months in 2014-15. Verdict: :tumble:

- NHS schema therapy for 9 months in 2016-17. Verdict: :king1:

- private therapy for 3 months in 2018. Verdict: :dontknow:

For me schema therapy was life-saving/changing. CBT was useful in teaching me how to manage soxial anxiety and that the voices aren't necessarily speaking the truth. Barely remember ACT, mostly coz the therapist was useless. Psychodynamic counselling at Oxford was complete mind**** and life-ruining. Private therapy went wrong fairly quickly and I was booted out :getmecoat:

I think the 'connection' with the therapist is a huge factor in which therapies people find successful or not
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The_Lonely_Goatherd
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(Original post by Interea)
I'd be interested in hearing more about your last bullet point there, but I don't really have a specific question It's just not something I've heard discussed before as I don't really know anyone religious, so I'm interested in a new perspective if you're up for sharing your experiences
Sure thing, happy to elaborate a bit on what I meant by that last bullet point! Def up for sharing experiences so long as no one's rude in an aggressive/nasty way about them

I'm a life-long practising Roman Catholic and when my voices shifted from just being to voices, to being psychotis-derived voices, I (and those directly looking after my welfare at Oxford) couldn't help noticing that this was all mostly happening in the context/location of my college's chapel :eek: Alongside persecutory/dangerous voices, I heard a lot of religious voices (both good and bad). As a result, I have a very spiritual, Catholic-influenced understanding of the traumatic things I was going through in the academic year 2009-2010 :yep: (For those who don't know, Roman Catholicism has a very and long-standing tradition of mysticism and saints who have had mystical experiences - including hearing the voice of God or seeing apparitions/visions of God or Jesus' mother, Mary. So having similar experiences to what I was undergoing.)

This has proved a point of confusion/contention/derision from various mental health professionals and clergy. The chaplain who looked after me in Oxford, for example, said that I'm crazy (he didn't use that word but that was what he meant ) and that the chapel was a safe place for me to 'be me', hence having good and bad stuff happen in the chapel. The first psychiatrist I saw, on the other hand, felt I should explore these experiences further (he is not religious but said he had seen patients completely 'recover' from psychosis after a huge event in their spiritual lives) and sent me to a hospital chaplain. This is the psychiatrist who took ages to provide a diagnosis :fyi: He even sent me to a colleague for a second opinion. Said colleague was a lot less open-minded and told me that religious voices = schizophrenia

Generally speaking, certain drs/therapists would be like "SHE'S HEARING RELIGIOUS VOICES, SEND HER TO A PRIEST!!!" whereas many priests would be like "SHE'S HEARING RELIGIOUS VOICES, SEND HER TO THE DRS!!!" :rofl: :nothing: No one really knows what to do with me or how to react to/interpret my lengthy, Catholic-framed explanations of what has happened to me. Some Catholic friends and family feel I'm possessed, and have tried to take me to full-blown exorcisms. My mum and uncle took me for a pseudo-exorcism in 2015 in Sri Lanka :nothing: Other Catholic friends think I'm on the path to sainthood and ought to write diaries of all my experiences :facepalm:

I'm still searching for "answers" from both drs and priests, as well as God too obviously, but am resigning myself to the fact that:

1) it's not so important how others want to label my experiences: my own understanding (however deluded) is what matters

2) the only entity who will ever be able to hand-on-heart tell me what happened, is God Himself

3) maybe all religious experience is "just psychosis" but actually, that doesn't dilute the experience or the power of people to use such experiences for greater good where appropriate

4) it's OK for me to flit between how I label my experiences :yes:
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Sabertooth
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(Original post by The_Lonely_Goatherd)
Awww thanks Less brave than I seem - Limited Profile people (aka the whole Sri Lankan community) can't see it :innocent:
:hugs: I'm sorry your family don't understand you.

I think if I put it on Facebook, I only feel brave enough for maybe 3 people?
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The_Lonely_Goatherd
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(Original post by Sabertooth)
:hugs: I'm sorry your family don't understand you.

I think if I put it on Facebook, I only feel brave enough for maybe 3 people?
Ah it's fine, dw! I don't care what they know or don't know, or what they think about me, but out of respect for my parents, I keep the SL community on Limited Profile. That way I can still be myself without having to deal with their BS
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artful_lounger
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(Original post by The_Lonely_Goatherd)
I've had (in chronological order):

- psychodynamic counselling at Oxford for one academic year. Verdict = :mad:

- NHS CBT for 9 months in 2011. Verdict =

- NHS ACT (Acceptance and Commitment Therapy) for 9 months in 2014-15. Verdict: :tumble:

- NHS schema therapy for 9 months in 2016-17. Verdict: :king1:

- private therapy for 3 months in 2018. Verdict: :dontknow:

For me schema therapy was life-saving/changing. CBT was useful in teaching me how to manage soxial anxiety and that the voices aren't necessarily speaking the truth. Barely remember ACT, mostly coz the therapist was useless. Psychodynamic counselling at Oxford was complete mind**** and life-ruining. Private therapy went wrong fairly quickly and I was booted out :getmecoat:

I think the 'connection' with the therapist is a huge factor in which therapies people find successful or not
PRSOM! That's interesting to learn about the different kinds of therapy. Glad that some of them were helpful! I think that makes sense what you said about the therapists making or breaking the therapy too
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