Lived Experience Forum

[Anne2021]

Recently I was talking to my psychologist about a 'debrief' from the experience of having had psychosis. I still have difficulty coming to terms with the traumas of having had psychosis, and with some of the things I have been through as a result of having had psychosis. I lost jobs and I lost my academic career: my professional reputation is probably in tatters and I get incredibly anxious that I will lose my job or become homeless again. 

I would like to hear any stories about how people coped having had psychosis. 

[tyme]

Hey @Anne2021 ,

Welcome to the forums. 

I don't have personal experience of psychosis, but having worked with many, I hear what you are saying. 

Your story reminds me so much of something I read recently about how someone lost their home, children, relationship, job, education etc, because if psychosis.

It's sad that this is not uncommon. By connecting with the forums community, I hope others will be able to share their experiences with you. 

[Anon33]

Hi Anne 2021, I had a couple of psychotic episodes about ten years ago. I was a high school teacher and got no support from the school I worked at. I left teaching but not without a payout. After some years I was able to build a small business and I took up writing and art. My psychosis was put down to schizophrenia and I got alot of help and followed all medical advice for the last ten years and I feel like there is nothing wrong with me. Actually I'm in a better position now than I was before the psychosis. My tip is to follow medical advise, up your insurance cover through super and just never give up on getting better and well I'm doing great now.

[Brightfighter]

psychosis is hard. ive been there many times, of which some i do not remember at all. im more aware now, or retain some level of insight when it strikes. i try to hide it but that only ever lasts so long. following psychosis, learning life as you previously knew it takes alot of time and effort, and ideally, support. currently, im suffering with voices and supposed delusions. ive got my psychologist saying they think im making the right choice for my health right now by not having an admission, while on the other hand having my psychiatrist suggesting hoospitalisation and ect. i hate going to hospital. it traumatises me every time. the judgement, the stigmatic views of the providers, being forced to do things i dont want to do, and very much having my autonomy overlooked

[RoseGeranium]

It's a hard thing to rebuild from. With private help [a psychologist and psychiatrist] I feel supported, but I can't keep on being able to afford to see a psychologist this year, whereas last year I could.  I think that coming on here makes me feel as if I'm not alone and that really helps me to unpack stuff and feel like at least my experiences will contribute to something.  

Did you end up going to hospital and potentially getting a peer worker to help you through your experiences?  I'm partly asking just because I am looking to get into that line of work and it'd be good to know what kinds of experiences people have had and if/why they thought it was useful.

I think that going on the disability support pension might be helpful for you.  You can work 15-29 hours a week on it then have it to fall back on if everything becomes too much.  I might take this route myself so that I can just take on casual work, 6 month contracts of maternity leave contracts.  

I haven't really had trouble with psychosis until four years ago at 35, so my experience with it isn't very long, but I know that I feel like my brain is a bit fried afterwards.  My antipsychotic medication does seem to help.

Have you found the right meds?

xo Rose.

[Anne2021]

Hi Rose,

Thanks for your response. It was nice to hear from you. 

I am currently not linked in with a peer support worker because I was discharged from my local mental health clinic despite still having psychotic symptoms. The peer support worker there didn't have lived experience of psychosis anyway and I felt that she didn't have much life experience generally, so she was of limited assistance. In the past I have talked to some other peer support workers who were helpful. My local mental health service has a peer support meeting each week but you are not allowed to talk about your mental health, symptoms or medications at it, which I think is ridiculous. How can you be supported in your mental health if you can't talk about it? 

Generally speaking I find that peer support workers are better at advocacy than non peer support workers. I would prefer to work with peer support workers but there aren't enough of them and anyway my local mental health service won't allow me to contact peer support although they still keep ringing me. They didn't explain why I can't have assistance from peer support when they still ring me to check in even though I've been discharged. I shouldn't have been discharged as I still need support: I am really annoyed that they discharged me against my wishes.

I actually feel that my local mental health service is absolutely pathetic. Its so stressful dealing with them and they havent helped at all really. But so much of this depends on the individual person or clinician that you are dealing with.

I'm on the max dose of my meds so my psychiatrist had to add another medication on top of this because I was still having symptoms. I'm hoping this will keep my symptoms under control but some days I wonder whether I will have to live with mild psychosis for the rest of my life. Not a happy thought.

I did look at going on the dsp but it wouldn't have been enough money to cover living expenses. The dsp was about five hundred a week but my rent plus bills (its a package where I live) is 400 a week. That would only have left 100 for food, petrol, car registration, medications and clothing, etc. It's just not affordable. I get really annoyed that in our society we limit how much people with a disability can earn and we trap them in poverty. Being poor and not having enough money is very stressful in itself: I didn't think I could do that again. Fortunately I've found a job that is low stress so I can work five days a week. In fact I'm working six days a week as I do a shift in disability support on Saturday mornings. 

How about you: how are things going for you now? 

Kind regards,

Anne

[tyme]

Hey @RoseGeranium ,

That post above was for you 🙂

[RoseGeranium]

@Anne2021 

Thanks for asking!  I'm touch and go until I can get back to study in the new year.  If I'm bored, I'm no good to anyone and I can get sick again easily that way so I am temporarily volunteering for a group until I can get my peer work study moving.

I'm so sorry that they discharged you early.  That's pretty common.  They have set systems and approaches for the level of crisis and unless you're in the worst crisis of your life, it's hard for them to seem to make enough time in the public sector to really support you.  Then you have the 'postcode lottery' of being sent to whichever service your postcode happens to fall into and it may be different across the city.  I know that a lot of people complained about this in various royal commissions and it sounds like it's still happening?  The way that the public system decides when and how to discharge can be brutal.  I know that emergency services can boot out people very quickly when they don't know how to access a CAT team but that's intense.  Some CAT teams seem to take hours to days in some places.

That's interesting your point of 'My local mental health service has a peer support meeting each week but you are not allowed to talk about your mental health, symptoms or medications at it, which I think is ridiculous. How can you be supported in your mental health if you can't talk about it?'........  I guess they don't want to trigger people?  Perhaps it's not meant to be a one-on-one service and maybe they are too easily overwhelmed if everyone talks about all of their personal experiences at once?  I wonder what the rationale is.  Is it all about providing you with strategies as a group?

xo Rose.

[tyme]

Hey @Anne2021 ,

Not sure if you got the tag above.

[Anne2021]

Hi @RoseGeranium

Hope you are managing to stay busy! When do you go back to study? 

I find having too much spare time challenging as well, so I travelled over the holiday period. I'm fortunate that now I have a job that allows me annual leave, which means I can take the time off and travel. I want to live an interesting life so, although it was a little challenging, I'm still glad I travelled. I travelled a lot before I got ill and so part of my accepting what has happened to me involves me doing the things I used to enjoy while I was well. 

Is there anything that you used to do before you became ill, that you'd still like to do? Do you have things on your bucket list?

Anne