Friends, Family & Carers Forum

[Biggles]

My daughter has been diagnosed with both psychosis (twice 2021 & 2022) and earlier with chronic fatigue syndrome/Myalgic Enchephalomyelitis (CFS/ME) 2019. (Previously to all that, she has been living with Major Depressive Disorder for some years). Because of previous traumatic events associated with her treatment for  psychosis, when she was on a treatment  authority, and now her untreated psychosis, she does not trust any medical professional and states she  does not have the energy to do anything about her conditions because of the CFS. Her trust in us, her parents, has all but diminished and she is distraught most of the time, often angry. She made it clear she would never self harm.

She denies  having psychosis. Her behaviour is getting worse. She is 45yo. Her delusions have been consistent over last 2 years.

I don't see  any way of getting her any treatment other than having her put on a treatment authority again. But her mother fears that doing so will further traumatise her and make her conditions worse (and won't have continued treatment for the CFS). I feel that is leaving us in a catch 22 situation.

We do not know how to proceed

[tyme]

That sounds so tough @Biggles .

I have been in the hand of the treatment authority. Yes, it was a very traumatic time, and even recently, years on, I still get flashbacks of things that happened.

Then again, I consider that if i wasn't under mandatory treatment, I probably wouldn't be here alive to tell the story. 

Yes, it is a catch 22, but I also feel that if having a daughter who is alive is better than not having a daughter anymore.

I recognise this is so hard now. What do professionals or her treating team suggest?

At the same time, do you have supports in place for yourself?

Please hold on. There IS hope.

[Biggles]

Thanks for the feedback.

She does not have any treating team, she does not even have a constant GP.  She distrust everybody in the medical profession.

Yes I am taking care of myself but my wife is not covering very well with it.

At least she has red or what you have said

[tyme]

To be honest, I think for me, the mental health team had to be cruel to be kind. Yes, it wasn't ideal, but I know for sure that if I didn't get the treatment I so desperately needed, I wouldn't be here today @Biggles 

It hasn't been an easy journey at all. It has often been distressing and horrific. Yet I'm here to tell the story and I have no regrets. I thank the mental health system for everything. Because honestly, I was at death's door.

As I post, I'd encourage you to really look after yourselves. If you need to speak to someone, feel free to chat to one of our lovely counsellors on 1800 187 263 (M-F 10am-8pm AEDT). Carers deserve to be supported too. You can't pour from an empty cup.

We are here for you.

[Biggles]

Re: Tyme requesting response 

Thank you for the feedback. I did ring the support number and spoke to Mathew who confirmed to me  that you sometimes  have to be be cruel to be kind. That if we don't have our daughter put on a treatment authority that her condition will most likely get worse.

In addition to the concern my wife has that our daughter may get worse if put on a treatment authority, my wife is concerned that nothing will be done about our daughters chronic fatigue syndrome (CFS)

Has anyone else had experience with Psychosis combined with CFS?

[Bernard]

I am in a very similar situation my child has refused any medical intervention in medication or counselling after suffering a significant psychosis. They are now back at home and I can see slipping back.

I don't know how to help as they are not open to any