Lived Experience Forum

[HumbleJ]

Hi,

I’d like gain some thoughts from anyone that has lived with negative symptoms of schizophrenia?

I’m finding a lot of new online resources discussing aspects of negative symptoms of schizophrenia what and how it works ect. I have yet to find much about carers or loved ones experiences or through first person.

I’m very interested to find out what others have experienced to gain more insight and prospective or any knowledgeable people would like to share. 🙂

[Eden1919]

@HumbleJ  I experience negative symptoms they are horrible they make it hard for me to complete even simple tasks or get anything done. 

[Appleblossom]

Welcome to the forums @HumbleJ 

Sorry about your diagnosis.  Not an easy one.

I was told both my parents had schizophrenia and I married a guy with it, so have had a lot of experience in the family role. 

They have not got a bloomin clue wots wrong with me, but it is not the big S .. apparently.  So much for the all the 'its genetic' hooha.

Hope you find some respite and some answers here on the forum

Take Care Apple

[HumbleJ]

@Eden1919  I agree whole heartedly. It can feel like your reaching for that thing on the shelf but it’s just out of reach. I find that a lot of my thoughts get cloudy and muddled. Thanks it’s nice to know I’m not alone

[HumbleJ]

@Appleblossom It must be a struggle sometimes to be the “compass” for your family. I wonder is there a way someone with a diagnosis could help repair any damage caused to the relationship. I ask because sometimes I have episodes and I worry I’ve hurt the ppl I love when I’m not myself. From your experience is there a way to mend things? Or lessen the “burden” I’m not sure how else to put it without sounding silly.

[Gwynn]

Pat Deegan, who lives with schizophrenia, wrote a really interesting blog post about her youngest sister’s experience of Pat’s first psychosis. She touches on making amends for the hurt caused. https://www.commongroundprogram.com/blog/mental-illness-made-me-do-it

[Jade30]

Hi @HumbleJ 

I have experienced a lot of negative symptoms from schizophrenia (well, schizoaffective disorder but you know), more recently in the last few years of my illness. 

I would say the most hurtful thing about negative symptoms is the blaming words: “lack of motivation.” I know that it’s a medical term but I think it implies that we don’t have enough get up and go to help ourselves along. I think of it more as lack of capacity. Our brains are damaged from the psychosis (in my experience) and our minds just don’t have the scope to do things that are often simple and even meaningful tasks. It’s a horrible feeling when you are trapped by this incapacity and you can’t grasp anything beyond it. I wish the medications would treat negative symptoms more.

Funny that your name is HumbleJ. I find the negative symptoms are a very humbling experience! For most of my 20 years with this illness I’ve dealt with more of the positive symptoms but they’re finally becoming a little more managed for now. It is certainly humbling finding that you just can’t do the things you so want to do. 

Losing my independence has been hard and being dependent on services and agencies is scary but I’m getting a bit of help for things that I used to be able to do that I can’t really do now (driving, cleaning etc). 

Anyway, I hope all that helps. It’s a very big topic for schizophrenia, thanks for giving me time to reflect on it. 

[HumbleJ]

@Jade30 thanks for sharing your story. I notice there’s a lot of stigma and uncomfortable wording relating to negative symptoms. Sometimes it’s as if we get cornered into a false narrative. We want to do things and independently too but stuck in a weird “child” like state. I don’t like saying “child like state” because being mature is being able to ask for things you need or want (help) without being made to feeling some way about it.
I’m happy that you have support. Part of your own reflection has helped me realise a few things 🙂 

[Appleblossom]

@HumbleJ 

Not sure I was a compass, but as first born, maybe there was a little of that.  Not sure if the negative symptoms were understood in the 1960s which was when they were diagnosed. Nowadays I believe my parent's individual and different trauma histories were key to their breakdowns and situate it in our psychosocial circumstances.

Sorry I do not have easy optimistic stories, but I think it is important to recognise that each person is unique, even if they have a similar diagnosis. Your journey is yours, tho there can be consolation and wisdom in hearing different experiences, make your own best choices. Try and give genuine apology for hurts.  Much depends on all the circumstances.

The 3 I knew intimately had vastly different personal histories and personalities, which can be lost if only focussing on the S word. My parents did their best. I know my father gave all he could til he died. My mother rejected the S word and all personal medical intervention after she regained some of us from the welfare.  She kinda blamed my father for everything and was in denial about her weaknesses and I tried too help and earned etc, but in the end left home early, and things got very bad with my younger siblings.   So tragically trauma was re-enacted through the generations.  My exhusband had an opposite childhood was very privileged, the etiology of his illness, seemed partly due to power dynamics in his family of origin and drug use. In some ways he did his best, but did not love or respect me and dragged me through dreadful situations.  He did not know how to say sorry, and my physical and mental health disintegrated and I had to leave.  There were positives in the relationship and children.  He came off his meds 30 years ago and has been "stable".

Oftentimes it is difficult to distinguish negative symptoms from medication side effects., eg sedation.  We cannot control how others respond to us, so if you have made best amends, all you, or anyone, can do is your best.  Sometimes circumstances and resources are limited.

Working on Self Care can be important too. According to your own lights. Knowing you are worth it. Apple