To not want to keep my schizophrenia a secret

[NightTerrier]

I was recently diagnosed with Paranoid Schizophrenia, which they thought was bipolar at first. Anyway, I'm feeling bummed out as it still causes me considerable problems despite the medication and I don't feel like I can be open about it.

It's a very stigmatised condition and most people don't understand what Schizophrenia is. I want to be able to be open about why I have problems with certain things that other people take for granted, but I fear being shunned by people. It's very isolating.

I'm not crazy or dangerous, far from it. I also don't have a split personality. The few people that know about it have advised me to keep it secret and tell people I have bipolar if I need to disclose that I have a mental illness, but why the fuck should I?

Part of me wants to advocate for this illness and be open about it. AIBU for considering not keeping this a secret and to be honest about my disability?

[NightTerrier]

Shizophrenia also robbed my of my eductation when I had to drop out of my degree. The paranoia means that I have a hard time getting out and about and I became a complete recluse for 2 years and also dropped out of the social scene.

I do have a couple of friends, but I'm definitely not the most sociable of people. Medication helps, but it doesn't solve all the probelms.

[BulletFox]

It's nice to have things described - I met someone who was bipolar/scizophrenic? (Can't remember which) who gave me an example of he could look at an empty mug and see curls of smoke coming out of it.

I was fascinated. He said psychiatrists love his descriptions!

I've got a close friend with schizophrenia, it all got a bit dramatic when she had an episode once and something major happened, after she tied me up in the back of a police car & the police had to detangle me.

She only confessed years later that she'd done that as I was the only person who she didn't think was an 'agent' so wanted to feel safe, I felt absurdly flattered at being spotted as a non-agent :)

[Grumpyteens]

TheGhost - That’s fine. Thank you very much for answering. I think deep down I was hoping for some respite, that someone would come on and say, oh no, it’s only bad when you don’t use medication, and you can still go on to do all the normal things people do. Sadly it seems this is not the case. I think sufferers of Schizoprenia are some of the bravest people on earth. I’m glad you’ve got a couple of good friends around you, that’s better than several useless ones.

[TheGhostOfBarryFairbrother]

Hey Grumpy,

I am bustling in to answer your questions from my experience, hope that is okay.

Schizophrenia has caused me to drop out of a fully paid PhD because I couldn't control my symptoms. I have predominantly auditory hallucinations - I hear voices telling me to hurt myself, make derogatory comments etc. I also have the Devil telling me that I am evil and that I need to cut myself in order to release the evil within.

It definitely stops me making friends. I get very paranoid about being a target for the Police so I don't go out very much. I can't cope with crowds as I feel that everyone is looking for me. I also have dropped off the "social map" due to being out of work/studies and having numerous hospitalisations.

I have a couple of good friends, one who comes to visit me in hospital and has been immensely supportive in a practical way, i.e. coming to pick me up from A&E in the middle of the night when I was still at uni. The other one sends me cards, listens to me and acknowledges the MASSIVE fear that comes with the condition without entering into the delusion.

[Grumpyteens]

Thank you very much for answering. Can I ask some more?

Has it affected your life choices? E.g education?
Does it prevent you making friends?
What would make life easier for you that a friend could do?

Sorry I’m asking so many questions, but I’m originally from a country where Schizophrenia is not treated at all . But I’m realising now thT it’s not a death sentence and people can still live normal lives.

[NightTerrier]

Grumpyteens. It's very hard to tell what's the illness and what is real. For me PS means constantly having to reality check everything. I probably start getting more suspicious of people when I'm getting ill and get very withdrawn because of this. I also become very obsessive, usually about religion, spirituality or things of a conspiratorial nature. However, I've never been interested in the flat earth theory.

I take antipsychotics and these really help.

I didn't realise what it was during the last episode. I generally don't know that I'm ill and can't tell until I start getting better again.

I guess everyone is different, but I have been getting psychotic about twice a year, with a real humdinger about every 2 to 3 years.

They thought it was bipolar at first and I was on a different sort of medication and was still getting psychotic episodes. It became apparent that it wasn't bipolar when they realised I was getting psychotic symptoms when my mood was normal. Hopefully I will get less episodes now with the proper treatment.

[Grumpyteens]

The only thing is - it really is a hard disorder to have or to live with.

This sums it up for me, it must be tremendously hard. After reading this thread yesterday i Did a bit of reading up on treatment and even that sounds hard. It’s not just a quick paracetamol and all is better and apparently the drugs only treat the physiological effects not the delusions etc , and some drugs take weeks to actually take effect. It all sounds like quite a heavy cross to bear, not made lighter by society. At least, it feels nice for people to sympathise if you’re ill and feeling vulnerable but imagine not to even get that.

I just wanted to ask some questions and hope you don’t find them offensive:

Do you know when an ‘episode’ is coming on?
If you take the drugs consistently does this prevent any episodes?
When you are having an episode, do you realise that’s just what it is?
On average (if there’s such a thing) how many episodes would a sufferer expect to have per year?

[NightTerrier]

annandale I can see what you mean. It's the luck of the drawer with side effects. I'm not thrilled about having to take antipsychotics, but I'm on one of the newest ones and it isn't as sedating as a lot of other ones.

You aren't being competitively miserable!

[annandale]

My husband has schizoaffective disorder. He used to have a bipolar diagnosis and I agree totally that there is less stigma about the latter.

The only thing is - it really is a hard disorder to have or to live with. In an odd sort of way I don't want people to think oh schizophrenia they've got the drugs for that these days! The drugs are hard to take and the cocktail of side effects is no joke. Dh worked full time for years but hasn't been able to for some time. Maybe I'm just being competitively miserable.

[NightTerrier]

I just made a psychosis support thread in the Mental Health section if anyone needs it.

[NightTerrier]

Thanks for all the replies. I'm still very much on the fence about it, so not that brave!

[dangermouseisace]

YANBU as long as you're prepared that some idiots might be a bit weird about it (mental illness being a 'shit filter' for weeding out idiots). I've only got severe depression but still people have been twats.

I've met quite a few people with PS due to hospital stays. I would not have known or even guessed they had it, in many cases, except that they told me. I get annoyed when celebrities talk about their mild sadness as 'destigmatising mental illness' when really society needs to hear from people with severe/enduring mental illness if true destigmatising is going to take place. So many people are uncomfortable with the schizophrenia label due to the stigma but how much better would it be if there were people talking about living with it, rather than the only mentions being people in the justice system? People like you, and those I met, with jobs, families...normal people.

[AlphaNumericalSequence]

YANBU and you are brave and good. We are so ripe for a movement to destigmatise and demystify schizophrenia. Mental healthcare professionals (for the most part) have a completely transformed view of the condition now, compared with the perceptions of a generation ago. And it is time for that more enlightened, positive, constructive view to find its way out into society at large.

It is unbelievable that there is so little awareness among parents of a condition that affects one in a hundred people. On average, one set of parents in every three classrooms have a child who will develop schizophrenia, often beginning in their teens when they are still in the family home.

Parents need be familiar with the illness. They should have some idea of what to look out for, as they do now with other common conditions.

But instead schizphrenia is still behind a veil. NightTerrier and other brave people like her will start to change this soon. xx

[TheGhostOfBarryFairbrother]

I have schizo-affective disorder, a mix of schizophrenia and bipolar. It's ruining my life. I want to be open about it but there is so much stigma.

Do you fancy starting a psychosis support thread in one of the health boards?

[tehmina23]

Deadbeat- in my case I have Depression with Psychosis rather than Schizophrenia.

So apparently the depression causes the psychosis.

During my unmedicated psychotic episode I believed that my managers & psychiatrist wanted me to kill myself, that my neighbour was plotting to kill me & that MI6 were watching me.

Now I take anti psychotics but I still have some strange thoughts & paranoia. The paranoia is a problem at work right now.

[PinkBuffalo]

YANBU at all. There should be more done to make this condition more well known. Unfortunately media over the years has not done much good.
OP if you were my colleague or potential colleague, I would stand with you. This condition is so misunderstood. I have family affected, and I wish the truth was known.
But I can understand the people wanting to keep it under wraps due to the stigmatisation. I have friends with HIV who feel the same. That is another condition that scares people, so people feel they can't be open about it.

[Deadbeat17]

This is an interesting discussion, thanks OP for starting it.

I've read about schizophrenia and psychosis but admittedly still am not sure about what the difference is medically between them? People with both seem to have episodes where they become very paranoid and often distressed? Though as I understand it, sometimes people are not that distressed, sometimes it's more a different kind of altered state like believing you are chosen for a mission or somesuch.

I hope it's ok to ask what the difference is, sorry if it's irritating and just ignore me if so.

[DrunkOnEther]

I think YANBU.

I completely empathise with you - I have Schizoaffective Disorder. I try not to tell anyone tbh, because as soon as I mention it it invites questions about what it is, and starts a conversation that I know is going to end with them thinking I'm literally crazy, unpredictable, uncontrollable, dangerous etc - any one of the things that media has portrayed such illnesses as.

The one that always upsets me is knife/gun etc attacks - one of the first responses people have is always 'ah, maybe they're schizophrenic'.

I find after telling people, a small minority are unperturbed; some others go almost super-protective of me (which can be a bit overbearing, & tbh doesn't help with paranoia any), and the majority do as I said before, & the difference is noticeable.

It's a bit of a Catch-22 though, because disclosing can lead to unpleasant situations, caused by general misinformation due to the majority of people not disclosing...

[CockacidalManiac]

I have Borderline Personality Disorder, it’s a stigmatised condition (even on MN) but not as stigmatised as Schizophrenia in society. I admire you for attempting to ‘own’ your condition; in the long run, it’s the only thing that will help to break down the stigma involved in mental health conditions.
I’d hope that one day it won’t be necessary for you to be so brave.

[Wilhamenawonka]

Thats a really good point about already having met someone. This is my point really which is that i know absolutely nothing about it even that it's so common.

There is so much stigma around mental health. I was never able to tell work about depression or breakdown because despite all the campaigns etc people do judge.
The stigma around schizophrenia is even bigger because of how it's been portrayed in the media.

Thank you for starting this thread

[NightTerrier]

Wilhamenawonka, you might have met someone who has it as it affects about 1 in every 100 people. So, it's quite common.

I would say the being non-judgmental and to ask them what you can do to help would be good. Also, don't take it personally if they are distant.

[tehmina23]

I don't know, I mean I have psychosis and I don't talk to my friends about it because I do worry it's a stigma.

Some people I work with know I take anti psychotics as I had a sadly very public breakdown but I wish they didn't know.

I even find it hard to talk to my psychiatrist about in case he gives me a new diagnosis.

[Tinksee]

I have bipolar and am fairly open about it.

I do a lot of public speaking and, on the occasions when I have mentioned the bipolar, I have heard the odd shocked gasp

I tend to respond by joking that this evening is my night off from stabbing people...

People sometimes do have ignorant views on schizophrenia - it saddens and frustrates me.

I recommend being open about it - it’s the other person’s problem if they are ignorant about it.

[Wilhamenawonka]

I've never met anyone with schizophrenia. Thank you for explaining what it's like because i don't understand it all. Given the stigma it's completely understandable why it's hard to talk about.
What is the most helpful way to respond or help if you know someone who has it and is going through a difficult patch?

[NightTerrier]

Aridane, I probably wouldn't disclose it at work. I'm looking for work at the moment and wouldn't disclose it to an employer, but it shouldn't have to be that way.

I don't blame you for keeping it private.