Lived Experience Forum

[Ruby66]

Hi there,

I have been remembering my sister who died 23 years ago by suicide. She was 28 years old. She received a Schizophrenia diagnosis a couple of years earlier after a number of difficult years. I have been reading some of the posts by carers and can relate to the fatigue and burn out from her difficulties which followed lots of problems my parents had in their marriage. I remember I was very resistant to her getting the schizophrenia diagnosis. I was so angry with my parents who I felt had not cared for her well being enough. I was still in my 20's trying to build my life. I didn't know enough about schizophrenia but I think my burnout was too great. I would like to know more about how schizophrenia is thought about now in terms of prognosis as to when my sister was alive. Her personality changed completely from being a bubbly, energetic person, to a quiet, depressed person. I feel I lost her before she suicided. I feel like I would like to do something in her honour, for all the struggles she went through.

[Appleblossom]

@Ruby66 

I think it is important to find a way to honour people who have died by suicide. In my way I have collected photos and things to keep my memory of my sister who also suicided and had the so-called schizophrenia diagnosis. 

Suicide in the family can provoke a lot of strong grief responses, as can mental health diagnoses. I am wondering if mental health diagnoses in current DSM will remain useful or relevant in the future.  

Were you younger than your sister?

[Ruby66]

Thank you Appleblossom. I am interested to see you write 'so called Schizophrenia' and wondering if current diagnoses will be relevant in the future? Could you explain a bit more about what you mean?

I am 5 years older than my sister

Thank you

[Eve7]

Hi @Ruby66  and welcome to the forums.

A quick tip, if you put @in a list will appear and the person will see your post.

Like this: @Appleblossom 

[Appleblossom]

Thanks @Eve7 

I was 4 years older than mine and 25.  It is not easy when we are socialised to be nurturing older sibs and the boundaries are not clear on launching and separating from the family of origin.  

I guess I have witnessed a few shenanigans around diagnoses in my family and eventually I have done my own research, so I take it with a grain of salt.  I have looked at DSMs in 3 editions and think they level up a little too quickly for my taste.  Both my parents had that diagnosis.  I now see it as intergenerationally transmitted trauma.  I could not 'blame' my parents, one had died many years earlier and my mother had her hands full. She did '' best", though things could have been done better. It was pretty complicated.  Her "private" psychiatrist at the time told me she might have survived if she had been in the private system.  

[amber22]

Hi there @Ruby66 

Thank you so much for sharing you and your sisters story, and how it had impacted on you over the many years. I really appreciate you being so open about it, and I am sitting here with you while you may be feeling any kind of way about it ❤️

I am so glad to hear that you have found comfort and interest in reading how other people have gone about similar situations, or just related to other peoples stories regarding a similar circumstance. It is definitely so important to highlight that you are in no way alone in going through this, no matter how much time has gone past.

I find that grief is something that never fully leaves you, and it comes in waves even years after the person has gone (speaking from my own personal experience). I have really struggled before with losing a special person in my life to Schizophrenia and how much that person changed over the years after the diagnosis. I think that it was especially tough having to realise that they were a different person to who I knew they were before, long before they passed away. If you can relate to that in any way, please know that you are not alone, and that I am sitting with you in those feelings. 

What I did come here to let you know was that there are so many posts about people dealing with individuals in their lives that have been diagnosed with Schizophrenia, or any other mental health diagnosis where they feel as if the person they know is completely changing. If you click on the link to go into the Friends, Family and Carers forum there may be more there that you can read about it (especially if you type in the search some key words). 

Thanks so much again for sharing.
Kind regards and warm hugs, 

Amber22

[Ruby66]

Thanks heaps @Eve7 🙂

[Ruby66]

Hi @Appleblossom 

Thanks so much for sharing your family story. 

You talk about so many interesting things.

Boundaries not being clear at the time of launching and separating from family of origin. Our 20's are definitely a time for that. Sometimes I ponder the impact of these family traumas on our entry into adult life and our still developing brains.

And seeing schizophrenia through the lens of intergenerational trauma. I think that was one of my big frustrations at the time, that I sensed my sister's distress could be trauma related but the term trauma was not talked about much at all then. I felt very alone with these thoughts and feelings.

When you say you have done your own research I'm wondering if you could refer me to anything relating to schizophrenia, and trauma?

Thank you, it means a lot to be able to share these thought with people who have had similar experience.

[Ruby66]

Hi @amber22 

Thanks so much for your message.

It does make a big difference to know there are others who have had similar journeys so thanks for referring me to posts where people are sharing stories like mine.

Grief sure does come in waves. I have just done 7 days of isolating at home with Covid and found myself thinking about my sister and crying many times, like the grief was waiting for an opportunity to surface. It was quite confronting but I guess I was ready for it, not protecting myself from the grief. I think I just feel very sad that the schizophrenia seemed to change the person I loved. It also feels terrifying that that can happen.

I have a beautiful, 18 year old daughter who looks like my sister and I can often feel quite fearful about the possible that people can change.

Thank you so much for your support

[Appleblossom]

@Ruby66 Trauma has only been popular to discuss in the personal development movement for the past 10 years or so.

Many people are stuck on the DSM as a bible, and I am not medically trained tho did research in a medical library.

Sometimes giving a Diagnosis reduced the blame in the "patient's"  relational systems, so that can be better as people everyone such as the mother or parents are blamed less, like saying the disease took her.  

I have looked at all sorts over the years ... Family Therapy ... At the time she died I was doing Psychosocial Theory.  I did get an extension.

I find it interesting that Yale felt the need to put out this little video .... talking about the 'limited hypothesis' of the "monoaminergic deficiency"  re depression. 

https://www.youtube.com/watch?v=BZOLxSQwER8 

The idea was pushed since 60s that Schizophrenia meant there was something "chemical" wrong with the brain.  Neuro biology is complicated. They are being legally careful saying it is a new era of psychiatry.  

It seems things are more interactional and more complex than originally thought.

I believe trauma and lack of resources and love cause a lot of problems.  

You expressed it well ,,, saying the grief comes in waves.  You were older than I, it would not be easy at any age. Yes it is difficult to see our children and feel the similarities with lost loved ones.  This is pretty raw, so I will log off, but nice to meet you.  

Take Care Appl