Lived Experience Forum

[Eden1919]

So I am still in hospital which sucks but now they are saying my current diagnosis is "Schizoaffective Disorder" (with a few other things) I don't know how I feel about this I am having trouble finding information on it and also I don't know how to tell my family or if I should tell them because I don't believe it anyway because honestly I just think the doctors are lying so that they can try and hurt me it is a long and complicated story anyway the point is I don't know what to do I have been trying to find support groups or something but I can't find anything it is like this doesn't even exist like there is no decent information anywhere and if there isn't then the doctors must be lying or maybe I don't know where to look I am not sure but it is stressing me out and I am not coping at all.. Has anyone else been told they have this? How did you feel? What else can you tell me?

[Mazarita]

Hi @Eden1919, my understanding of schizoaffective disorder is that it combines elements of schizophrenia with elements of mood disorder (depression or mania). Here is an information sheet I found about it:

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/schizoaffective-disorder

I have no direct experience of schizoaffective disorder, only the mood disorder part of it (I am diagnosed bipolar). But I wanted to tag in @Queenie, who I believe has the same diagnosis as you. She may respond later if she's able to offer more help.

Wishing you well, @Eden1919.

[Former-Member]

hey @Eden1919

From personal experience, while at the Hospital they will identify symptoms you possess. Then after seeing a Specialist for several weeks, you will be given a "Clinical diagnosis" which is final diagnosis.

Initially I was a danger to my life, so they started my treatment / medications early. 

In regards to breaking the news to your immediate family, I did suggest to wait it out for final diagnosis. Right now you could go see a counsellor and have a chat with them. 

Also while you are at the Hospital I suggest to try and answer their questions as honest as you can. Let them do their jobs.

Good luck.

[Eden1919]

Thanks i am answering as honestly as possible but it is hard i am not sure because they have been trying to work out the diagnosis for years now and i am strating to think they never will and it is all a load of nonsense but oh well anyway i am just not sure what to do everything is confusing at the moment and there is so much going on it just is frustrating.

[Lunar]

Hello @Eden1919

I think you are doing a great job at questioning all of this and reflecting on your mental health symptoms to try to figure out what is best for you and your treatment, I am wondering whether @Queenie might have some advice on this diagnosis as they have a great thread called Oh no not again schizoaffective disorder ramblings that might be helpful for you to read through 🙂

Lunar 🙂

[utopia]

@Eden1919 - I wonder if @Lunar or @NikNik could direct you to some information on this diagnosis. Is there anything on the Sane Website? They normally have fact sheets about different disorders. Maybe you could also try BeyondBlues website as they also have fact sheets.

[Queenie]

Hey @Eden1919, just popping onto the forum now, as our cat accidentally shut down our NBN service last night and I wasn't able to get back on until now.

Yes, I have schizoaffective disorder. My particular disorder is like living with schizophrenic type symptoms (hallucinations, delusions and problems with affect) plus bipolar type symptoms (severe depressive episodes plus episodes of mania). It can be a bit of a rollercoaster at times. I have learnt over the 10 years+ that I've lived with the illness, it is important to build a steady support base around you. I have instances whereby I believe I am well again and stop taking my medications, and then relapse. Slowly, I am coming to terms with the fact this illness is a facet of me, it isn't the whole me and, just as a diabetic takes medication for their illness, so I have to also in order to live well. 

Schizoaffective disorder doesn't have to be the end of the world. I know there is a lot of negative connotations and stigma surrounding schizo anything. If you are affected by negativity because of your diagnosis, try to remember, you are still the same person you were before the label was imposed. 

That's the best bit of advice I can offer you. If you have any questions at all, don't hesitate to tag me (and providing the cat doesn't put our NBN service back in the dark ages again lol), I'll get back to you ASAP.

[Rockpool]

Hi @Eden1919,

I second what @Lunar says, being both inquistive and reflective is a really great thing!

Following @utopia's tag I just wanted to pop in and give you some more resources if you feel you need them.

Wellways have a factsheet here that you can read.

You can also read Sam's Story about her experince with schizoaffective disorder. Sometimes reading another person's journey can be helpful.

[Eden1919]

Thanks everyone. @Queenie So basically it is like have schizophrenia and bipolar at the same time.....? I dont know how i feel about that also i am finding it really hard to know what to say to people when they ask what is going on as far as most of my family (except my mother) know i have "just depression" (i dont mean for that to sound like depression is easy or not difficult to deal with because it is and it is horrible and really not nice) but they just think i am sad a lot basically and i dont know how to explain that there is so much more going on and like i find it really hard to tell what is what most of the time because people will say this is a part or your illness to me but then i think it is real and i cant tell which is which like the other night there was this dead girl following me around and scaring me and the nurse at the hospital kept saying "oh it is not real dont be scared it is not real" but it looked real and sounded real and it was right there. i just really dont know what to think like how do you know? and a lot of the time i get really worried that the doctors and stuff are trying to hurt me and the doctors keep saying that that isnt true but i think they are lying and i dont know it is just really confusing. sorry this is getting so long i am just very unsure at the moment. 

[Queenie]

Hallucinations and delusions (false beliefs) can be very real to the person it is happening to @Eden1919. I've had episodes where they were so real and what I believed was so real to me, it took quite a long time for me to realise that what I was experiencing was part of the illness. Because I was constantly being told "it's not real" but because it seemed real to me, I developed a firm mistrust of doctors and medical personnel in hospitals. 

There are two types of schizoaffective disorder, bipolar type (which I have) and depressive type. It can be very confusing and daunting when this label is thrust upon you. Especially when you are already in a distressed state because what is happening for you.

Try to be kind to yourself at the moment as much as you can. There is light at the end of the tunnel!