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Something’s not right

Pinkflower
Casual Contributor

Shock diagnosis

To start with, I’m a 30 year old female. I’ve been in treatment for mental illness since I was 16 - initially anorexia and depression - and my diagnoses have changed so much over the years. Most recently I was told I had bipolar 2 and OSFED. This was by a psychiatrist I trust/ed enormously with the last 7 years of my life. Prior to that I was repeatedly told I had BPD even though that didn’t fit right with me.

On Friday I saw my GP and she brought up a letter from my psychiatrist that said I have schizoaffective disorder, which is not a term that’s ever been used to describe my illness/es. I called my psychiatrist to explain to me on Monday and he got back to me today. He told me that we’d had this conversation, and said it was while I was having ECT, but the bipolar diagnosis didn’t even come up until 2 years after I had ECT. I do understand that I experience severe depression and mania when I’m unmedicated. I have had episodes of delusions - but usually when I’ve been severely depressed or in a mixed state. 

 

I’m a professional working in an industry that would be extremely unsupportive if anyone ever found out. I know so little about schizoaffective disorder and feel like my psychiatrist didn’t really explain it very well. I feel devastated that I’m going to be on medication for the rest of my life, with side effects I hate, when my plan was in the next 2 years to see how I went cutting out some of the medication (obviously under the direction of my dr). Now none of that feels possible. I’m questioning myself and everything I do. I wanted to have kids, but I don’t want to pass this on. It took me a long time to accept the bipolar diagnosis and this seems so much more terrifying for me than having that. I’ve been crying on & off since Friday. I feel so alone with this. There’s maybe 2 people I can tell and I don’t feel like they really “get” it. I’m probably over reacting, but I just never thought this would be my life, you know? 

10 REPLIES 10

Re: Shock diagnosis

hi @Pinkflower

A hearty welcome to the SANE forum.  I am Whitehawk the moderator of the forum this evening. I am sorry you are going through a tough patch at the moment.  It is great though that you have been able to reach out to the forum community and so openly describe what you are going through.  I am sure you will be able to find support and encouragement here from forum members. if you ever need any advice about how the forum works or how to use the forum please check the guidelines or reach out to the moderators.

 

Again, it is great to have you aboard and well done!

 

Whitehawk

Re: Shock diagnosis

@Pinkflower  Hey Pinkflower welcome to the forum and welcome to the schizoaffective club :). I was diagnosed with psychosis, then bipolar 1 and then schizoaffective disorder so I know what you mean it being a shock. I am older than you and have had kids (the eldest being a bit younger than you) he is doing well btw. He has a good job, a girlfriend company pays his car and he is living overseas learning another language ..... so what I am saying is dont give up on the hope of having normal children. My two other children have issues which are not related to my diagnosis just the luck of the draw I guess.

 

Anyway I just wanted to say dont give up on your dreams re job. They never have to know Just take your medications (yeah I know it sucks I hate them too ....), stay healthy, away from alcohol etc all those things that the docs say and you can do this.  Ugh! I wanted to give up meds but I am so much better on them that I have accepted the weight gain now being sane and fat is so much better than being mad and thin. Md and thin is not a good look ....

 

Have a look around the forum the Good Morning thread is a great way to meet other formites. If you wish to tlk to anyone in particular put a @ infront of their name like I did for you and that will notify them that you have tagged them. I hope I have helped a bit to lighten your mood and put you at a bit more peace. Love greenpea:)

Re: Shock diagnosis

Thanks @Whitehawk for the welcome.

Re: Shock diagnosis

@greenpea, thanks for your welcome. It’s good to know your children aren’t impacted, that does give me some hope. I just know my grandmother had bipolar & I wouldn’t want to put a child through the hell this has been. But I guess the reality is that there’s no guarantee any child won’t have struggles.

I’m so scared what this means for my job. And I’m sure part of that is the stigma I carry myself. But maybe it would be ok if I said to a colleague once I got to know them that I had bipolar, but I feel like I could never say that I have schizoaffective disorder because I don’t even understand it, so I can’t expect anyone else to.

I don’t know anyone with this illness. I’m so scared of ending up stuck in the public mental health system for the rest of my life, just deteriorating like so many people I’ve seen while I’ve been in hospital. I don’t want to have course after course of ECT and not be able to remember years at a time. I don’t want to not be able to trust myself. I know I’m reality I’m no different from what I was before Friday, but I just feel so overwhelmed, sad and scared for my future. I haven’t had an admission in 8 months and I never want to go back to hospital again.

Re: Shock diagnosis

@Pinkflower  hello I am diagnosed with schizoaffective disorder (bipolar type) it is a complicated thing to diagnose as it is kind of a mix of many different things which is why sometimes it takes a while to be noticed it also cant be diagnosed during a "first episode" so that adds to the time it takes as well. as far as what it is, it is basically psychosis+ a mood disorder either bipolar or depression. and i guess the way i understand it is that you have psychosis that happens both in a mood episode and out of a mood episode and that you have mood episodes so if you are bipolar type you experience mania as well as depression and if you are depressive type then you experience depression. the outlook for it is supposedly quite similar to that of bipolar disorder but of course everyone is different. i wasnt told that i had it either at first they refused to tell me anything but then when i was taken to emergency by my case worker they said it to the nurse and i was very surprised and didnt really know what it was. anyway i have heard some professionals dont like telling people diagnosis because they think it will make you stop trying to recover or something which personally i dont think is the case but who knows. but i am sorry you are having to deal with this. it is hard but you arent alone there are quite a few of us out there in the world. 

Re: Sho@ck diagnosis

@Pinkflower  Pinkflower Eden1919 did a brilliant description of the difference between schizoaffective disorder and bipolar on a previous post titled something like 'difference between schizoaffective disorder vs bipolar 1'. If you find it it is worth a look. 

 

Re: Sho@ck diagnosis

@Pinkflower  hey i found the post @greenpea  was talking about this was about bipolar 1 vs schizoaffective/schizoprenia if you want me to clarify anything i meant in there let me know. 

 

the way i understand it is that with Bipolar 1 you shouldnt have psychotic symptoms unless you are in a mood episode and that the psychosis is a result of the mood but that the psychosis only comes when you are manic or depressed or mixed but NOT when your mood is stable. 

 

Shcizoaffective is when you have mood symptoms found in Bipolar but you experience psychosis OUTSIDE of a mood episode ASWELL as when you are in a mood episode.

 

and Schizophrenia is when you have psychosis for a period of time longer than 6 months consistently and you can have mood symptoms in schizophrenia but the mood is driven by the psychosis where as it is the other way around in Bipolar. so Schizophrenia means the mood is caused by psychosis and Bipolar 1 with psychotic features is the psychosis is caused by the mood. 

 

it also has to do with the length of time you experience different symptoms. I hope this made sense if i could draw a huge chart i would but anyway hopefully that helps. 

Re: Sho@ck diagnosis

@Eden1919  best explanation ever :).xx

Re: Shock diagnosis

Just wanted to say I'm thinking of you @Pinkflower 

You are not over reacting. It's a hard thing to hear.

From what I read in your post, you are a strong person. You have been through a lot but you are still standing.

Diagnosis is a complex business, and it can be shocking. It's only useful if it helps you live a better life. As you said, you are the same person, before and after.

Take care.

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