Supporting and promoting the well-being of mental health carers and their families.
Mental Health Carers Austalia.
26-07-2021 10:55 AM
26-07-2021 10:55 AM
I live with schizoeffective disorder
At times life is insanely difficult. I'm a single mum of 2.
I've very recently been given an NDIS plan. And I'm honestly torn between been so relieved for support and embarrassed. I'm embarrassed about my condition and a very select few know about my diagnosis and only 4 people in my life know I have an NDIS plan. Honestly I'm terrified of people finding out. It makes me feel less than or something, I can't quite explain why I feel this way but I can't shake it either.
I inherited my disorder. My Nan is a very uncontrolled schizoeffective disorder suffer. She has caused so much carnage in my family its hard to follow behind that and not feel in her destructive shadow. Her father my great grandfather had the disorder aswell and he ended up murdering his wife and then committing suicide. So there is family stigma involved for sure.
How have all you beautiful people managed to overcome family stigma and society prying eyes from what you feel are your short comings ?
26-07-2021 11:13 AM
26-07-2021 11:13 AM
Hi there
I can see how you struggle with your mental illness and i can see how it must affect your functioning. By posting on this forum you are reaching out and this is a good thing. You are not alone despite the barriers that you put up sometimes to protect others from your illness. Sharing your experience with others can be helpful but i understand if you are hesitant to do so. Is there someone you can trust to talk to.? Your family history is not you. You have so many other aspects to you. You are a mother and i am sure you love and care for your kids. You recognize beauty in others so that means you have inner beauty in you. Take good care of yourself. Love Robyn1
26-07-2021 12:03 PM
26-07-2021 12:03 PM
Hi @BBB_ & welcome to the Forums! 👋
I'm so sorry to hear of everything you've been through. Feeling that stigma on top of everything else makes it even harder too, I'm sure. You're certainly not alone and I hope you'll find support, connection and like minded others here.
I'm going to tag a few other members who may also have other insights to share @Oaktree @eth @Mazarita @bipolarbunny @Determined @Anastasia @Appleblossom @Gwynn
Wishing you all the very best,
TideisTurning 🌸
26-07-2021 12:49 PM
26-07-2021 12:49 PM
It's a huge thing to go from being unwell sometimes to 'being disabled'. You might like to search for 'NDIS grassroots' on Facebook, it's a group for people with disabilities that discusses everything to do with the NDIS.
If you can, get a support coordinator to help you find good supports in your area, if you're not already plugged into adequate NDIS supports. This is literally their job, they act as a personal disability secretary for you and can help you when it comes time for your NDIS plan review.
26-07-2021 02:22 PM
26-07-2021 02:22 PM
Hello @BBB_ and a big hug and welcome to the forums.
I too am a single Mum so hugs and props to you, it's not at all easy.
I am on a mobile phone so it's difficult to give you a really in-depth reply but I understand that you feel embarrassed about NDIS, my son was the same when we first started to talk about using it and having "carers". It's really helped him.
You don't have to share with anyone, it's your business and yours alone if you choose. I promise you if you get the right supports in place it will make a difference for you.
Do you have a support coordinator on your plan? I'm happy to help. I've navigated NDIS for the last year and whilst I'm still learning am happy to help. If you have support coordination included please google your condition and support coordinators. I don't think I can mention the organisation but there is one that specialises in schizophrenia. I know schizoeffecive is not the same but the main difference is that they are TRAINED in mental health. We wasted a year with one that had no mental health background and was useless. Hence why I had to step up and learn so much. (I work full time so just couldn't keep going in three roles)
Choosing one with a mental health background means they should have lots of connections and ideas as to how to help you and to utilise tour funds best for you. I hope that makes sense?
Just tag me with @in front of my name if you would like a chat or advice.
Can I also say I think you are pretty amazing. You give me hope for my boy and I am so glad that @TideisTurning tagged me and I met you. I really look forward to getting to know you 🙏
Trust me you are not alone, it's really good to have you here. 🌷✔️🙏💕
26-07-2021 03:06 PM
26-07-2021 03:06 PM
Hi and welcome @BBB_ please don't feel embarrassed about your diagnosis, you are not your illness. Unlike your previous family members you now have better supports, treatment and medication to support you. Take what ever you can and be a good role model for your children unlike your nan is to you, as I am sure you already are. 🌺
26-07-2021 04:55 PM
26-07-2021 04:55 PM
Hearing you @BBB_
It is difficult to know who to trust, and it is complicated balancing between being disabled and still functioning at your best.
I have a similar complex tragic story with generations of serious MH. I had to accept being on NDIS, as my family is still not out of the woods yet.
Make the best of your NDIS plan, as you have a significant trauma background and anything that helps in raising kids is worth it.
I had a weird encounter a couple of months ago that shows the issues you mention are still real ... for me ... hope it all works for you.
out with my NDIS worker on a walk and talk, and a loud socially dominant lady I know came across us. She snubbed sidelined me and did the dirty flirty thing with my spt wkr, as I foolishly introduced him as such ... she loved me being put in that shameful situation. Thank God my spt wkr is a very good value person and realised her put down of me was not appropriate. So my confidence in him imporved and my awareness of her pettiness will be fully noted in any future run ins ....
Better to be wise than sorry ...
26-07-2021 06:40 PM
26-07-2021 06:40 PM
@Appleblossom wrote:Hearing you @BBB_
It is difficult to know who to trust, and it is complicated balancing between being disabled and still functioning at your best.
I have a similar complex tragic story with generations of serious MH. I had to accept being on NDIS, as my family is still not out of the woods yet.
Make the best of your NDIS plan, as you have a significant trauma background and anything that helps in raising kids is worth it.
I had a weird encounter a couple of months ago that shows the issues you mention are still real ... for me ... hope it all works for you.
out with my NDIS worker on a walk and talk, and a loud socially dominant lady I know came across us. She snubbed sidelined me and did the dirty flirty thing with my spt wkr, as I foolishly introduced him as such ... she loved me being put in that shameful situation. Thank God my spt wkr is a very good value person and realised her put down of me was not appropriate. So my confidence in him imporved and my awareness of her pettiness will be fully noted in any future run ins ....
Better to be wise than sorry ...
I'm sorry that happened @Appleblossom 😔❣️
26-07-2021 06:56 PM
26-07-2021 06:56 PM
Thank you @Anastasia
I am in a secure enough place now to look at it as a social learning exercise.
26-07-2021 08:08 PM
26-07-2021 08:08 PM
That is good @Appleblossom although it's still totally unacceptable and disgraceful behaviour. Obviously the person has very low self esteem. Kudos to your kind sw. Bugger kudos to you for your growth to let it ride 🌷
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Supporting and promoting the well-being of mental health carers and their families.
Mental Health Carers Austalia.
Our Mission
To be the voice of mental health carers to enable the best life possible.
Get In Touch With Us
We're here to support and promote the well-being of mental health carers and their families
Mental Health Carers Australia is the only national advocacy group solely concerned with the well-being and promotion of the needs of mental health carers.
Supporting and promoting the well-being of mental health carers and their families.
Mental Health Carers Austalia.
Our Mission
To be the voice of mental health carers to enable the best life possible.
Get In Touch With Us
We're here to support and promote the well-being of mental health carers and their families
Mental Health Carers Australia is the only national advocacy group solely concerned with the well-being and promotion of the needs of mental health carers.