Lived Experience Forum

[kenny66]

I have had a mental illness for most of my adult life. I had a long history of childhood abuse which may have contributed to me developing the disorder. I have been variously diagnosed with Bipolar Disorder, Schizophrenia and Schizoaffective Disorder, which was the correct diagnosis arrived at in 2011.

I suffer from hallucinations almost on a daily basis and occassionally suffer from the usual delusions. My constant symptom apart from hallucinations is hypermania. And of course depressed moods which i get infrequently.I have comorbid PTSD, OCD and epilepsy. 

I take two antipsychotics and two mood stabilisers and an anticonvulsant which generally keep me pretty well under control. I got sick late last year with spending three months in a mental health clinic but that has been my longest hospitalisation. I do not despair about my illness, but rather focus on the positives of greater articulation and creativity.

Fortunately I dont find my meds sedating at all. I generally function very well but suffer a bit from isolation and difficulty socialising, which I am trying to fix by spending more time with people. Most of the people I know think my behaviour is quite exccentric but they accept my quirks with good humour. I dont have any violence issues at all but rather am very gentle. 

My biggest issue is trying to find a job as there is so much stigma and complete opposition to employing people with a mental illness.

I live in a Far North Queensland regional centre where the job market is almost non existant for anyone let alone people with mental illness.

I am trying to contribute to the mental illness population by starting some volunteer work at a disability employment provider which I hope will come off soon.

I am lucky in that I have a flatmate who puts me on the bus, makes me take my medication, makes sure I eat and look after my personal hygiene. He is a paranoid schizophrenic and has his own issues but we look after each other pretty well.

I notice that the government and media are deamonising people with a mental illness. It would be great if they could get to know the real issues facing people with severe mental illnesses. I hope some people will respond to me on the forum.

[Harry]

Hi Kenny66. That was a great read, so thank you for sharing your story. I found it very interesting that you mention creativity is a part of your own mental health experience. I was wondering how you go about expressing this?

Cheers

Harry

[kenny66]

Hi Harry

Well I will start out by saying that I was mentally ill, probably from very early on, maybe about 12 or so. I was certainly hallucinating very early on and had behavioural problems which was a sort of dissociative personality disorder.  Even at this age I was writing abstract prose and poetry. I hallucinated frequently and wrote contiunually while they were happening. So I was turning in poetry and essays at school written during these phases which were constantly winning prizes. I came from a very poor background where none of these things were valued or recognised so most achievements dissappeared into the abyss. At 18 I won the country prize for creative writing. Its difficult to explain but I could always take on a state where I could submerge myself into a subject and write about it from a particularly novel aspect. In my working life I was always in positions requiring people skills. I worked in public relations for a long time.Most of my success in the public relations area I put down to delusions, not quite of grandeur, but a enhanced confidence and invincibility brought about by the delusional stage of schizophrenia. Every time I slipped out of this delusional stage, which could last for years, I crashed and burned. My creativity is I believe absolutely attributable to my illness as when I am heavily medicated, it just dissappears. Every aspect of my life is multidimensional, moving beween manic projects and hallucinogenic states, creative projects, poetry, writing and prodigeous reading, usually of obsure texts. Its all interconnected to my Shizophrenia. Whilst it sounds complicated and complex, living with it on a daily basis is interesting, not depressing. It sort of colours my personality and to a great extent makes me who I am.

[Alessandra1992]

I think it is wonderful that you are sharing your journey to help others see where difficulties lie. Employment is really hard in regional areas, and it is inspiring that you are keep persisting. The friendship and care you have with your flatmate is phenomenal, true peer support!

[Moon]

Thank you for sharing your story. I can relate to living with Schizoaffective disorder and the way that creativity is intertwined into it, for me as well. It can be harder with some medications to tap into that creative place, but you have to make sure that you don't cross that line that is unhealthy for you mentally and risk stopping any medication.

[kenny66]

Hi Moon

I am usuually very compliant with my medication, mainly because my flatmate makes me take it when I should. I have had periods of manic behaviour when I dont want to take it to bring myself down from the high I am enjoying but i can mostly resist this. Medication is a whole new topic by itself, the way we modify our routine around it and how it can become a focus of our life. Fortunately I have no real issues with my medication,which are at high doses, but my side effects are moderate so Im happy to keep taking them. I find taking 2 antiphsychotics hard sometimes but live with it.

[Snare183]

Hi,
I was diagnosed with schizoaffective disorder in 2004, and find this forum a comfort to know that I'm not alone with this diagnosis, as I find myself having to disclose what it means too many times, having to explain my symptoms..

[kenny66]

One of the irritating things about the diagnosis of Schizaffective Disorder is the fact that most people don't know what it is.

I think of it as a where bipolar meets schizophrenia mix, but explaining that to people often meets with confusion or ignorance.

I think part of the problem is that it is positioned by medicos sometimes as a very severe and rare form of schizophrenia, and not a disorder in its own right. Even my GP refers to it as "the bad schizophrenia".

It really is quite different to either schizophrenia or bipolar, as you know with its own very definite symptoms, but communicating that is hard. 

I just usually use the shorthand diagnosis of schizophrenia to make it simple, which everyone seems to understand. Explaining Schizoaffective Disorder to everyone you mention it to becomes really frustrating.

If you go into the spell check on this site you will see, even there, that it doesnt give Schizoaffective Disorder as an opition. It does have Schizophrenia though.

[kitkatsoppy]

Hi, I have also been diagnosed with schizoaffective disorder.  I have had a mental illness of some sort since Oct. 2002.  I have been admitted 7 times over the years.

I take 6 different medications a day (only one of them is not related to a mental illness).  I can't find a job because I am too sedated, and thus I can't work fast enough.  i have half a degree of a university course, but now my brain is too fried to continue that.

I also had ECT treatment in mid-2012.  I have a feeling that that treatment made my brain reset itself, and it also stuffed my memory up.

I just guess I will have to plod along and be doped out everyday, look for work that isn't suited for me, and get depressed at night times.

Thats my story lol

[kitkatsoppy]

Also, my mum told me yesterday that I shouldn't talk to her about my mental illness problems anymore.  As well as that, theres probably half of my family telling me how to lose  weight.

I am sick of it all, and I am not afraid to talk about my mental illness.  I just guess I will never be able to go overseas for more than a month (not that im going overseas anytime soon tho lol).

Finally, if I did work fulltime and lose my pension, I wouldnt be able to afford my medication.  I dont even see what the point of working is...stupid crap