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NikNik
Senior Contributor

Living with schizophrenia

Hi everyone,

Schizophrenia Awareness Week takes place from 15 -21 May.

Here within this community we feel is is vital that the voices of those with lived experience (whether that be as a carer or someone experiencing the illness first hand) be heard, so others can be -

- Educated about schizophrenia

- Understand schizophrenia and reduce stigma

- Feel less alone in their own experiences of schizophrenia or other mental illnesses.

So we want to hear from you.

We want to hear your reality of schizophrenia as a carer or as someone with schizophrenia

What is it like?

How do you manage it?

How do you maintain hope?

What helps you?

What is your life like outside of schizophrenia?

 

We want to hear your story, in whichever way you want to share it - it could be a narrative, a poem - whatever you want.

You can post it below or you could email it to team@saneforums.org

45 REPLIES 45

Re: Living with schizophrenia

Well... Since I was diagnosed a few weeks ago, or whenever it was, I have been told by several people that I don't have it at all... Which makes me feel like I'm just a terrible person after all which is what I suspected in the first place. Because if the paranoia and delusions I experience, as well as the memory loss and the mental confusion, loss of pleasure, etc all the rest of it, aren't really schizophrenia, then I suppose I'm just stupid, lazy, incompetent, etc. and I should just "get over it" already.

Re: Living with schizophrenia

Just wanted to elaborate on the last post so that it makes more sense... If I am experiencing a delusion, then I speak to people, and they say things that trigger my paranoia and that makes me feel like they are in on the delusion, I can be extremely rude to them because at the time I seriously believe they're in on the conspiracy... But then later on when I come to I realise the delusion may not have been real and these people dislike me and are spreading rumours about how awful I am because of how I acted to them previously. Then I have to deal with the guilt and shame of having been horrible to them AND the fact that they don't like me and are spreading rumours about me now and other people are gossiping about me and dislike me now too. That's what I meant by feeling like an awful person. When these people hten turn around and say, well no, nothing is wrong with you... It's like well if that's the case then I truly am rude and obnoxious 😞

Re: Living with schizophrenia

I'm categorized or I guess Diagnosed as Schizoaffective.

It's also called, Bipolar with Psychotic features.  

It's also been to refered to as One part Bipolar, One part Schizophrenia.

 

Whats it like? 

Well, its not always easy.  Sometimes downright frightening.  It's like your mind and your senses are capable of picking up stuff that other people cannot.  This would be the hallucination aspect.  It can range is severity, From mild hallucinations like hearing voices occassionally tohaving an entire conversations with someone who turns out not to be there.  The delusions that go along with it,  can be enjoyable or not so much.  Mine are often of the exciting variety, like I'm a secret agent or people are after me for some reason. The difference between this and imagination, is that I often lose myself in the delusion and lose my grasp on what is real and isn't.  

How do I manage it?

With medication, which is a vital part of treatment.  With the right combination of meds, the symptoms that I mentioned above rarely if ever occur.  The only problem is that it lessens my creativity and passion. 

How do I maintain hope?

Well, i hope that someday, through genetic engineering and advances in medicine, that the disorder I have as well as others will be a thing of the past.  I might not live long enough to see that day, but I'm hopeful for future generations.  I've accepted who I am, what I have and what my life will be probably like.  Prior to developing this illness, i was on my way to law school, with a beautiful fiance and a 3.9 GPA.  That has changed and it took a long time for me to accept it.  The adjustment to living with this disease was not easy.  But without hope, there is only despair.  So not much of a choice there.

What helps me?

Medication.  A kind, loving, supporting and understanding family and community.  Music.  Exercise.  Cathartic Writing.  Talking to other people with similar problems.  

What is life like outside of schizophrenia?

This may sound gloomy, but there is no escape.  It goes where I go.  Its something I've learned to live with.  

 

 

Re: Living with schizophrenia

I had a Truman Show thing going on for... A while now. It's gradually petering out though. I have one other delusion that doesn't want to let go no matter what. The other day I hallucinated... I used mindfulness and just let it go.

The medicine makes me tired... Makes me exhausted. Tired is a pleasant feeling compared to the exhaustion you feel on that stuff. You crave sugar 24/7 because you have no energy to do anything, everything is a constant battle. If you do find yourself in a position on that stuff to relax and not have to work so hard, then someone interrupts it and makes you exert yourself, then sometimes you get angry. Why can't they just leave me alone to be exhausted? And yeah it kills emotions and creativity dead.

Although it is exhausting wondering if a delusion is true or false, I like being able to connect with people on an more emotional level. I also find it incredibly difficult to write code on that stuff... Programming is just an extraordinarily confusing task on antipsychotics. For months I thought, what the hell is wrong with me? I used to be able to do this so easily... And I kind of gave up on it thinking I had brain damage or something. Then after I'd weened off the meds I came back to it and realised my brain was up to the task again. Strange stuff...

The meds did eradicate the voices though. I still hear some sometimes but now I can recognise that they're abnormal since having been on the meds, and they can be dismissed with mindfulness.

So yeah the drugs do help but this idea that we have to be on them forever and ever... I'm just shocked that medical science hasn't advanced far enough to come up wtih different treatment options. Like come on science.

Re: Living with schizophrenia

I had the trueman show delusion going on too for awhile.

Mostly because I thought people were watching me like 24/7.  

I totally understand about you getting angry at people you thought were in on it.

I would sometimes talk about things, then someone say, in the grocery store would be talking about the same issue.  Immediately I would think that their in on it.  

It was difficult to watch TV, because I find it boring most of the time, but also because I thought that they were specifically talking to and trying to manipulate me.

I thought I was under survellience for the longest time and anytime I got off my medications, that delusion usually comes back eventually.  I am not sure if it is because I am so bored and wish I was something important or what.  But if I saw a something odd, like a van parked on my street overnight or a car drive by more than a couple times, i'd think that they were part of a surveillence team.  Eventually this delusion would progress to include just about everything.  Not just my house is being watched, but my phone, my computer, I'm under satelight survellence, the people I talk to, the places I go, really anytime I leave the house.  If it gets bad enough, I will find that I start believing people can read my thoughts.  

The crazy part of it is that, there are like two parts of me, one wants to embrace the delusion and believe that its very real, the other tries to keep me grounded in reality and is still rational.  

With the medications though, I quickly lose those delusions and can resume living a relatively paranoid free life.  But your right, it does sap energy.  I've also noticed appetite increases.  But it really helps me with my paranoia, that paranoia makes my life almost unlivable if im not being treated.  And it definitly works to improve disorganized thinking.  

Thanks so much for Sharing @DefiantPanda, I really appreciate hearing your story and not feeling so all alone.  

Sincerely,

Tyler77

Re: Living with schizophrenia

Hey @Tyler77

I had that damn TV Show / Radio message thing going on too... For a long time. It was very frustrating. Then I realised that marketing companies are surveiling my iPhone, every search I make on Google, every website I visit on my computer, my tablet, my phone etc, seeing every purchase I make on ebay, every book I borrow from the library, everything I download, etc, etc... The list goes on. Then they use this information to group us into demographics and target us with advertising and news stories and 'research'... And it does actually feel like they are talking to you personally, yes... Marketing companies and the government even have the power to know where we are at every minute of every day (not that they use ALL the information, just bits they want to target advertising at us), and they can even know who we slept with if they wanted to (both people's smartphones at the same location at the same time from 9pm - 7am the next day). It's kind of freaky if you think about it. And yes it does make you feel important, especially when you're unemployed and isolated. And yeah there is always two parts of you, one that tries desperately to reality test and the other that tries to avoid reality completely... Doesn't want to feel anxious and depressed, doesn't want to deal with issues and move on. Paranoia is tied in with self esteem... An inability to defend one's self esteem leads to paranoia... I feel guilty about something, I walk around in public feeling anxious, I hear snippets of conversation and my brain clings onto things that make me feel bad and validate my bad self esteem. Or I'm with a group of people and someone makes a snide comment - I wonder if it relates to me - I get paranoid... If I just face reality and start thinking more about how other people feel I will quickly realise that people are just assholes (haha) and my bad self esteem is getting caught up in it all... Anyways. I'll stop rambling now. Just avoiding fixing a bug in my code that I can't seem to figure out. Probably get up tomorrow and it will be staring me in the face, making me feel stupid for missing it... But I'm not going to give up on the project 🙂 Thanks for sharing also Tyler77... I think the more we all talk to each other the better we learn what is happening to us and how to deal with it.

Re: Living with schizophrenia

I was diagnosed as Bipolar with psychotic features. I agree that this is the most accurate diagnosis. However I mainly concentrate on the bipolar part. When I manage to keep tjat under control, the psychotic components become much easier to manage. I try not to go over the delusions and hallucinations too much but I must admit that with so many people walking around seemingly talking to themselves it makes it much easier to hide my more overt ramblings in public simply by plugging an in an ear piece attached to my mobile phone.

Re: Living with schizophrenia

I do the same thing with my phone...

I'll go for a walk and I must rant to myself, I hold my phone in my hand like I'm talking to someone with a earpiece in.

Re: Living with schizophrenia

Hi there Tyler77, 

 

I don't suffer wiht schizophrenia, or schizoaffective disorder, but I am interested to know more because I have five friends with schizophrenia: one is a psychologist; one is an academic; one is an artist; one is a GP; and one is just a friends who plays the piano.

The psycholgoist friend has told me that he has learned how to recognise the difference between reality and delusion that leads to hallucinations, visions and hearing voices. I should ask him how he does it in details   but basically he said that he has learned to notice differences in his physical body when he becomes affected by delusions and hallucinations, especially in his stomach. He knows somehow the difference between reality and hallucinations.  Imagine if they devised a method to help people to somehow identify somedifference and train them?

 He told me that it takes a lot of experience and knowledge to be able to do this and that now the voices or hallucinations, still there, do not bother him anymore. They are there but have no immediate effect on him. He is a terrific psychologist for people with schizophrenia. 

 

This is perfectly true and indeed he has made a movie to show how he teaches people with schizophrenia, wheatehr they take drugs or not, to manage their conditions.There is a uTube film online about this psychologist (he will not disclose my identity he is a friend) and how he helped this doctor to continue to practice as a GP in a hopsital despit having paranoid schizophrenia. He helped the doctor and the doctor recovered well. I know the doctor still practicing today 🙂 The film, available online, is called The Doctor who hear voices Rufus May is the psychologist who made the movie. The doctor in the film is not the real doctor because of confidentiality issues to protect the identity of the doctor that works in a hospital. The doctor is portrayed by the English  actress Ruth Wilson who in this movie is brilliant.  Beautiful, educational movie.

 

He was hospitalised and was told that he would never make it in the outside world that he had to be institutionalized, because he suffered with severe or chronic paranoid schizophrenia. He proved everyone wrong, got his degree in psychology, without telling anyone about his condition (in his days they had no computers to keep track on people like they do today) and today is a very well respected psycholgoist.

 

Does this make any sense to you? Just for curiosity, I would like to hear your opinion. 

 

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