Lived Experience Forum

[justanotherguy]

How many people out there are struggling with schizophrenia diagnosis/support/care? I just saw a recent YouTube video that had an appalling title stating schizophrenia was a dangerous mental illness. I mean, what!? After all these years, this illness is still being victimised for little reason.

After being vaguely diagnosed with schizophrenia years ago - "We think you might have schizophrenia" - I began the life of somebody who would be gradually shunned by society. For a long time it didn't feel right - How was I supposed to act? Could people tell? Should I tell people? I was generally told not to tell anybody. Hmmm. If I had depression, or cancer, or diabetes, that's ok to tell, but not this? 

I started understanding the stigma around it, and felt ashamed. But truthfully I didn't know why. I was always a considerate person, tried to do the right thing, but felt like a criminal. I admit I had been through a period of extreme distress and did display some quite pronounced irrational behaviour that worried family members, but at the time of my 'diagnosis' I was actually pretty stable. It just didn't add up.

It took a number of years and real fight to extract myself from the system as I gradually realised it was not the true picture.

* @moderator - I am not advocating rejecting diagnosis. It became apparent, with support, that I was misdiagnosed. Please get proper advice*

My main concern has become the total victimisation of this 'illness'. Still it is shunned and not understood. I felt like I was expected to crawl into a corner and disappear.

People with schizophrenia are generally caring, even sensitive, and would rarely hurt another person. But society has somehow changed over time and has become more aggressive and tribal than ever before. The rawness of society is a shock to people with schizophrenenia and, depending on how serious, many struggle to accept it. Being cast as a social villain with little explanation hurts even more. The MH service is either not aware, or doesn't care.

I would like to see people with this illness be taught how to cope with society better, rather than just medicated and shuffled off to the side. The reason so few people in society seem to care anymore is because most of the carers have been dumped into the 'psychosis' pile! Caring people can empathise with others, but society is so twisted it is now seen as weak and undesireable and label it as 'mental illness'.

I'm not sure how this is supposed to play out. All societies need a level of empathy to function, no matter how callous. Even Vikings had empathy in different ways.

Feel free to comment if you like.

[Historylover]

Hello, @justanotherguy. Your post made interesting reading and linked to an observation I have made—that many people, once diagnosed with any illness—become that illness and lose 'themselves' in it. 

The public's interpretation of the word 'schizophrenic' is totally different to the actual symptoms, but society will find and create underdogs where they can. 'Paranoid', 'senile'... 

I have wondered, too, how much patients have themselves contributed to the misconception. How many introduce themselves as having a so-called 'mental illness' —a point made by Paula Kaplan on one of her YouTube videos—yet how few people would introduce themselves as being a migraine sufferer, e.g.

Sufferers of any so-called 'mental illness' have symptoms to be treated. Getting a (mis-)diagnosis does not help a jot, and any therapist who sits back and medicates or advises certain other forms of treatments is not getting to the cause of the problem. Saying they don't know what causes these problems is a cop-out. What exactly do they know?

[Former-Member]

I was diagnosed with schizophrenia twenty years ago and have mostly been going fine since then because I was very careful who I disclosed to. I have worked as a social worker and a teacher in that time and things have been okay for the most part.

However, a couple of years ago I had a six month relationship with another teacher. Unfortunately for me, he clearly knew someone in common with me (wouldn't tell me who) and now EVERYONE knows about my diagnosis. In the past two years I have been bullied and harrassed and generally treated really badly. I had to stop working because of it. This is all because people knew. They had no problem with me before someone told them my diagnosis. But once they knew, they had serious problems with me.

I have been belittled and ridiculed and humiliated. It has been dreadful.

My advice to anyone with this very stigmatised illness is to be very careful who you tell and only tell people who need to know.

[justanotherguy]

@Former-Member @Historylover @moderator 

It became obvious that there were certain people in society that would go out of their way to hurt you. And you knew if you fought back in any way you would be labelled as 'paranoid' or all sorts of horrible untrue things. It became so stupid, I didn't really know what I was supposed to do (other than disappear), so I tried to behave, yet they still attack you. It's like at some level they look at you and see some imaginary thing they need to destroy. It's just sheer madness.

I'm still searching for solutions, I looked into zodiac signs last night, and lo and behold! My abusive narcissist displays all the traits of their starsign! I don't really care at this stage as long as something works.

[Historylover]

I really don't know what to say beyond discussions through this thread, @justanotherguy. Some people just need a fall guy, because if there was a level playing ground, they might come off second best. Just deal with it as best you can. It can't last forever. Work around difficult people as best you can—grin and bear it. You're the bigger man.

[Appleblossom]

@justanotherguy 

I agree with most of your post.  It is so difficult to be diagnosed with Schizophrenia, or even be close to people diagnised with it.  You wrote.

"People with schizophrenia are generally caring, even sensitive, and would rarely hurt another person. But society has somehow changed over time and has become more aggressive and tribal than ever before. The rawness of society is a shock to people with schizophrenenia and, depending on how serious, many struggle to accept it. Being cast as a social villain with little explanation hurts even more. The MH service is either not aware, or doesn't care."

Part of my commitment to advocacy and being on this forum so much, is to shift societal attitudes or at least encourage society to be better informed.  The whole concepts of "out of touch with reality" and delusions... are often seen as key, but taking a genuinely psychosocial approach and getting to understand individual personality and social circumstances tends to indicate ... there are usually reasons ... 

I really liked your thread title about personality and avoiding conflict. A great idea. I have a mixed approach to personality ... some vague interest in zodiac and various personality schemas ... archetypes.  .. MyerBriggs ... cute animal types ... They all seem to have some value, depends on how far you take it....

Glad you are finding inner strength and a path to follow.

[justanotherguy]

@Historylover ,

Going back again and making comment about telling people about illnesses. 

For most people, having an illness brings some kind of sympathy and usually support. Having an illness is obviously a blow to your life, but support is supposed to help.

But then you come to MH. For some reason schizophrenia is different. You don't get support from anywhere. It's crazy! It's just like leprosy in the dark ages, or I guess AIDS in the 80s. I remember a lot of stigma around AIDS (still is). There's obviously something else going on, with sch. you are literally cast as a social villain. It's madness! As I don't think I have it, I can actually play with it a bit. The fear/vitriole in some people has been very hard to take over time. On the YouTube video I saw, a comment claimed putting out someones eyes was an effective 'cure' for schizophrenia! I mean WTF!!!??? And you call them an animal???? FY.

[Historylover]

@justanotherguy, there are so many misdiagnoses and unnecessary diagnoses floating about in the field of psychiatry that it seems to be for the purpose of stigmatizing the already suffering. You seem to be suffering more from a (mis)diagnosis than from schizophrenia. Such a loaded word, isn't it? Society doesn't even need to understand the symptoms and causes of any so called 'mental illness' for them to consider it the worst word to call anyone. Ignorance and misinformation abound, and psychiatrists can find a disorder in anyone if it is convenient to them but can't find a cure for any. Clever, aren't they? 

Ignorance abounds in society. I have no answers except to say that it is rare to find genuine empathy. All seem to be looking only after themselves and looking for ways to benefit from others' misfortune. I instinctively look after others, but when I need help in the real world none is forthcoming. More and more, I find people are predatory. If people are different in other spheres, I'd very much like to find them.

[Former-Member]

@justanotherguy Part or a lot of what you said resonates with me. I’ve been diagnosed with it and everywhere I g, well most places, I get shunned as you put it. 

someopeople will shun you, even if they don’t know, I call them morons. But they think they’re king s*** for bringing somebody down. For about a year I was accepting my diagnosis after denying it for 10 odd years.

surprisingly I’ve worked close to 15 years, but average about just over a year at a place, well because of morons. That’s the only thing apart from family that keeps me going.

so what is your diagnosis, I hear you said you were misdiagnosed… ??

I want to connect with people with MI cause only we know what we have to go through to fit back into society, for me this is complex, used to be so easy