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Bc2ast
Contributor

20 years since 1st episode

Most of the time I forget about my history. At the end of last year though I sent away for my medical records via the freedom of information act. I've had four episodes. The first does not seem to be there, the third was when living overseas. I have the records for two. It's interesting, confronting, and surprising. To see how clinical the notes from health professionals is odd and a little hard. Of course it's necessary but the dry, boring way my life, my thinking processes, and experience were reduced to is odd to see. Even after a long time. The records are from hospitalisation in 1996 and in house observation with cat team in 2008. 

My papers state my diagnosis as schizophrenia and bi polar. Now in my memory I was never explicitly told this. I just thought I was close but had psychotic episodes. I remember doctors telling me I'm schizophrenic, or borderline bi polar but never took it seriously. They never said it with any gravity. Anyway. I was on all the drugs, put on the weight, went through the system but to a limited level, two week in hospital the max length. I have lost relationships, jobs, postgrad qualifications. 

After each episode i went off the drugs myself as they were so debilitating, though initially necessary. 

In read an article recently https://www.mentalhelp.net/articles/prognosis-and-recovery-factors-of-schizophrenia/

"Ten years after initial diagnosis, approximately fifty percent of people diagnosed with schizophrenia are either noted to be completely recovered or improved to the point of being able to function independently. Twenty five percent are improved, but require a strong support network, and an additional fifteen percent remain unimproved and are typically hospitalized. Unfortunately, ten percent of the affected population sees no way out of their pain except through death and ends up committing suicide. Long-term statistics for thirty years after diagnosis are similar to the ten year mark, except that there are even more people who improve to become independent. However, there is also an increase in the number of suicides to fifteen percent. Over time, women appear to have a better chance at sustaining recovery from symptoms than do men."

I guess I'm in between the 10 and 25% and I feel fortunate at least for that. 

I have made it through, even if I go back down again some day. No one really knows or gets my history. I'm presentable so if people know they minimise it or see me through the typical lens based on poor media coverage.  

Argh. I'm tired. Sometimes I feel cheated. My peers without any major disruptions like I have had are ahead in many aspects in life. I'm sometimes jealous. It feels petty. In most aspects, I'm privileged. I hear few stories I can associate with though. I don't mean from here. I haven't read too many yet. I feel a detailed examination on the structure and trajectory of psychotic narratives have been only partially successful. I feel health professionals still protronise and do not really understand. I think it's meant well, generally. 

If people can point to narrative research I'd be very keen to have any information. 

Take care all. 

9 REPLIES 9

Re: 20 years since 1st episode

I have had the odd experience of reading professional's views of my family and me in files .. though mine were from being made a ward of the state when I was 6. 

 

I think you are on the right track .. I have felt anger and jealousies about the impact of mental health has had on my life but in different ways to you.

 

http://dulwichcentre.com.au/articles-about-narrative-therapy/

I think this is from South Australia.

The yanks tend to be more dogmatic in their approach to mental health ... labels .. definitive standards & manuals etc ... I dont know if it has to do with the level of fundamentalist thinking in their culture.

I hope we Aussies carve our own path and a develop more organic homegrown styles to deal with the struggles of our locals.

Re: 20 years since 1st episode

Hi @Bc2ast,

thanks for sharing so much with us.  I have had the strange experience of being on both sides of the fence.... I suffer from depression and anxiety and I have also worked in public hospitals, including a short time working in a psych ward, for much of my life. So I have even been the one writing those dry, emotionless, clinical notes on patients. How odd!

Clinical notes are legal documents and you have to choose your words very carefully.... you can't show any bias or emotion or make any personal judgements. So they come across as very impersonal. I remember lots of patients wanting to be able to read their personal files/histories while they were in hospital because they felt as though the staff might be writing all kinds of descriptive or juicy stuff in there..... but no, they were always disappointed to see that we only wrote the bare minimum.

I remember my psychiatrist sitting across from me in her office writing her notes and I'd see her pause, trying to pick the right word.... being so careful. I have often wondered what she wrote, but I firmly believe that her notes would not tell me anything I don't already know.... so I have never ventured to find out. 

I do think that one of the reasons I was able to progress with my therapy and treatment was that I absolutely was able to see where the health professionals were coming from and I felt I really understood the limitations of their work and what they could do for me. So, unlike you, I did not really feel patronised. 

I can relate to feeling a bit cheated by this life I've had.... dealing with depression and anxiety.  I don't feel I've ever reached my full potential and now that I'm 46, I think I'm not really going to go ahead and do much more with my life. 

Since becoming mentally ill ten years ago, I went on to marry, to complete a master's degree, to change careers (unsuccessfully!) and to move to a country town. I've travelled extensively overseas with my hubby and I've weened myself off medication. So I guess I would be considered a 'sucess' story? 

I look presentable, too. It helps that I'm interested in fashion, hair and make-up - I always have been. No-one would guess what I have been through and how it skews my view of the world.  The few people I've told about my mental illness don't seem to get it. Why would they? I feel quite jaded most days. 

 

Re: 20 years since 1st episode

I've thought about getting my medical records but I've stopped myself because I'm not brave (or strong) enough to read what they say.  I also dont trust them to be correct.  I remember being in hospital for 10 days about 20 years ago and the doctor was trying to tell me I was anorexic because I wasnt eating.  I wasn't anorexic, I had a phobia about eating in public and back then everyone in the ward ate in a dining room (I dont know if they still do) so I couldnt eat there.  I was happy to eat (and thankfully the other patients would sneak me food) but not in public.

Whatever they say in those records is only their interpretation based on a very short period of time, so while the curious part of me wonders what's written I don't know that I would really get much out of it.

Re: 20 years since 1st episode

Hi Sahara,

Sorry, I know this isnt the topic but .... 46 isnt that old!!  You still have years left!  There's plenty of time to do stuff 🙂

Re: 20 years since 1st episode

Hi, 

 

I can associate with this post. I knew the files need to be clinical and stripped back I didn't take it too personally. Some of the ways they interpreted my delusions I found interesting. There was one term they used on certain occasion I did find patronising. I asked a mental health worker friend of mine and she said it has clinic use and was not related to the lay definition. The term was "fatuous", which means, apparently, flat affect or the like. I've had many health workers, most were benign but never good, my main doctor in the early years I found patronising. I had some odd side effects to the medication which I found distressing and which he laughed upon hearing. It's all long time ago. I think that's the main jist of it for me. I get on with things and move on. But it's had such a profound effect on my life trajectory and again, I never really know if it may happen again or not. Every time I get past 5 , 6 years I'm like, yep, finally moved on. And then...

 

all the the best out there. 

Re: 20 years since 1st episode

Hi @Bc2ast

I can relate to being worried that my illness could come back again. I feel I always have to protect myself from everything, which is exhausting. 

One of the main reasons I chose not to have children is the fear of Post Natal Depression; so that is quite a big life decision. I will never know if I would have suffered with PND or not. I just live with the uncertainty.

I am worried that I would not survive another episode of major depression. I keep thinking.... what if it returns? Will I even live to tell the tale???

I am constantly on guard for situations that might trigger depressive thoughts. I monitor myself, hour to hour, especially when I am alone. Lately, I have not felt too good when I am at home alone.... although over the past 2 years or so I have always enjoyed my alone time.  This recent change in mood has me on "high alert".

I'm sorry to hear that your doctor laughed at your symptoms. He/she must have had a very black sense of humor, and I can imagine he/she went home that evening feeling a bit guilty for laughing. But this does not excuse the behavior.... it is very unprofessional. 

I have been guilty of using black humor while working in hospitals, but I would never do so within ear-shot of a patient.... and I always felt I was laughing at the situation and not at the patient themselves. I am getting off track a bit... but working in a very stressful environment where people's lives are at stake... it's uncannily like that T.V. show M*A*S*H - you do tend to use humor when you can. 

 

 

Re: 20 years since 1st episode

Oh, @Alone,

thank you for saying that I am not old! I feel old!

I can not imagine having to be young again, though. The thought of it exhausts me even more than being 46. Forty-six is a dreary age. It's so in-between. I have none of the advantages of youth and yet I'm a bit too young to retire and just sit and relax. I want to retire! I feel like I must have earnt retirement by now. It's so bloody unfair. Smiley Embarassed

 

Re: 20 years since 1st episode

46 is a great age!!  I'm 50, so trust me I have been there.  I exercise everyday and love it.   You're still young enough to do a lot of things, but you are old enough to have some wisdom behind you. 

When you are 90 and in a nursing home what sort of life will you be looking back on?  We all have problems, but life is still what we make of it.  Don't throw it away.

Re: 20 years since 1st episode

Black humour is the flavour I prefer. 

Keep up. It's hard, but it's all we can do. It took me 10 years to keep my thoughts in check. It's never absolute though. You know all this though. 

I wish you all the best. 

 

 

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