Lived Experience Forum

[Bismuth]

I have had a diagnosis of schizophrenia for 21 years now, since I was 13. Whilst the reactions I get to the word “schizophrenia” have gotten a bit better, it’s still not great. People start walking on eggshells and get weird expectations about how I’m going to behave that have very little to do with clinical schizophrenia.

 I’m thinking of ditching my diagnosis. If I need to tell a doctor, fine. But because I can’t hide my illness, people usually want to know what’s going on. They even ask for specifics, which is a bit rude really (“do you mind telling me what you have” etc.). I think from now on I might just say “I’m neurodiverse” and flat out refuse to give more information than that. Has anyone else done something like that?

[Eden1919]

@Bismuth  if i have to tell people something i usually just say i have "mental health issues" and refuse to go any further than that plus there is the issue that not many people have even heard of schizoaffective disorder so i just try to keep things as general as possible. i think saying you are neurodiverse is a good way to start. 

[Appleblossom]

@Bismuth I spent a lot of time trying to understand the nature of schizophrenia due to multiple diagnoses in my family.  In the end, I take the Dx with a very large grain of Himalayan rock salt.  I just see it as a way of saying a person is overwhelmed by life. Others may disagree.  It is hard to be completely clear in the way we disclose or not, it is not as simple as do it only if you are comfortable with it.

[Former-Member]

@Bismuth if your strong enough in communication you can tell people it’s like any other illness, like diabetes or cancer or depression. 

im a listener so I tend to go with depression as people are more likely to understand that, and I’ve had it also.

my dads telling me to be more open and not worry but I can see where you’re coming from. I’ve had family members or associates become weird and hating towards me all cause of this illness. My doctor advised me not to open up until I become comfortable and trust the people I’m disclosing to, remember you don’t have to disclose to anyone but have a choice. I’m 34 and feel pretty lost about it all but you have to become stronger as do I about what people think, that’s just my take on the situation 

[Little_Leopard]

@Bismuth 

I am forced to frequently lie about who I am because of my illness and the stigma discrimination that comes with it.

I lie and tell people that I am working or studying when the truth is that I have never been able to do that. 

I have to constantly pretend to be someone I am not and am constantly “masking” so that I can fit in. 

I actually just made a post about the discrimination and lack of support from GP’s and other mental health “professionals”.  Healthcare is not really free anymore as everyone has gone private. Those of us on low incomes or Disability Pensions can not afford to pay for private!
it just seems that people with complex mental health conditions can’t catch a break.

it’s hard enough to live with a complex or chronic mental health condition. We don’t need people throwing discrimination and judgement on top of it.

Sorry that I could not be more up beat on helpful. I am just so fed up with it.

[Gwynn]

Also just consider saying what adjustments you need, without having to say why.

[Bismuth]

@Appleblossom  I get that it may feel nice to say that, but it’s extremely problematic. Here’s why. My symptoms don’t fit any illness but schizophrenia. So let’s say my illness doesn’t exist. I’m overwhelmed. What does that even mean? If I’m not sick, I have no reason or excuse for being overwhelmed and I should get over myself and snap out of it. I’m suddenly a moocher on government welfare when I should be working. It’s extremely dismissive of the suffering the symptoms cause.
That doesn’t feel as nice to say, so let’s say I have some unidentified illness. Whoops, now you find doctors won’t treat unidentified illnesses. Better think of a name for it. Well, the only medications that work are antipsychotics, and I’m not bipolar, so better call it schizophrenia. And we’re back to square one.

I don’t have a problem with the actual diagnosis, it’s how people react to it that has me upset. Frankly, telling me that I’m just overwhelmed and not sick is a pretty bad reaction to the diagnosis too, just in a different way. I don’t think you’re being unkind, but that is the end result regardless.

[Appleblossom]

My story has more layers than an onion skin.

I am sorry that you felt invalidated.  @Bismuth 

It was far from my intent.

There was been little niceness in my experiences so that does not fit well with me. From being abandoned at 6 years and chronic neglect physical and sexual abuse.  NOT from those diagnosed btw, except for their preoccupation, overwhelm and inability to provide adequate financial and social resources.  The diagnoses in my family came from significant trauma, though some people on here, believe in the genetic hypothesis. I believe thet trauma is involved in the etiology of schizophrenia in its variety of presentations..

I do not consider you a "a moocher on government welfare " as you say, though I know such judgments are common and harmful.  That judgment gets tossed at me when I also have a lot of work and study history.  Sick of all the discrimination.

It can be difficult when schizophrenia becomes an identity, trying to open the field.

I was just opening the discussion, but keeping it brief, not closing down with any judgment.  

[Little_Leopard]

hey @Appleblossom. you are actually correct in saying that trauma and life experiences plays a role in determining whether a person will develop schizophrenia.

Its not the cause but is considered to be one of the many factors that can help to determine weather it will manifest. But yes genetics is also a big factor.

[Patchworks]

@Bismuth f

Hello Bismuth, from watching some medical videos on youtube, I've learned that there are moves to rename the illness from schizophrenia to something like psychosis syndrome. It has come about due to the huge stigma of the label and its implication of having a split personality as schizophrenia stems from old language for split mind.

I totally support this movement to rename it. While I live with schizoaffective disorder, noone knows what that means so I explain it as having schizophrenia and depression. I don't relate to the label and definitely don't share my diagnosis with people except those in my family and very close friends I've known for a long time. 

I get the feeling of hiding a part of myself and masking when with others. It gets me down sometimes that I must hide a huge impact on my life like this illness and how it's helped me to  understand other's experiences better and myself too. I get envy almost when someone discloses their physical illness to me and I can't share my illness too. 

So much more needs to be done to disprove the stereotypes and misunderstanding of ppl with schizophrenia. And don't get me started on discrimination especially by the insurance industry. 

I've said enough, I hope my words resonate even if they don't help you