Lived Experience Forum

[Miss-wish]

Hi Everyone,

There are a lot of mental health issues/ lived experience/ diagnosis that I don't know anything about and i would like to learn. I would like to start with Schizophrenia. 

On the weekend I noticed that misunderstanding /miscommunication is a common thing when talking to people that have other lived experience/ mental health issues/ diagnosis. It can seem like sometimes they have there own language. 

So I was hoping to do a post on different mental health issues/ diagnosis / lived experience to help understand what people are dealing with, and to stop some misconceptions.

Everyone's lived experience is different. What do you see as myth or fact in your experience? 

What are carers experience looking after/ helping/ loving people with Schizophrenia? 

What are the things you think people should know?

How can people help others with Schizophrenia?

I am hopeful to start a conversation that is beneficial for everyone  

[RiverSeal]

Hey @Miss-wish, love the idea of opening up a discussion around different mental health issues/diagnoses / lived experience!

I am diagnosed with schizophrenia and have many years of lived experience with it and supporting others in their recovery journeys.

Everyone's lived experience is different. What do you see as myth or fact in your experience? There were people in my life who thought schizophrenia was having multiple personalities which is a myth. Also, a myth is that people who are diagnosed with schizophrenia are dangerous when the fact is they are more likely to be the victims of violence. It's a fact that people who are diagnosed with schizophrenia can live meaningful and fulfilling lives and work, study, have families and be part of the community.

What are carers experience looking after/ helping/ loving people with Schizophrenia?I have a lived experience with schizophrenia but can speak to what I received for my family. My family came to visit me in hospital from interstate every time I was admitted. They provided me a safe space for me to go visit them interstate for many years. And their unconditional love was like a safety blanket in the most severe parts of my recovery journey. They have also said the worst things about me particularly my sister and resist my recovery when I returned to work and as my life improves and would rather see my staying on the DSP than taking on more work.

What are the things you think people should know? That everyone who is diagnoses with schizophrenia has to ability within themselves to recover with the support of formal supports like community MH, psychologists, counsellors, psychiatrist and support workers, etc. Family is important or a chosen family can be equally important if you are not supported by your blood family. Not everyone has that though and I believe someone could still move through recovery with the support of formal supports.

How can people help others with Schizophrenia? Hearing voices support groups are an amazing way to give and receive support with your peers. That shared mutuality and understanding of what we experience, learning what others do to cope, how other people's symptoms affect them, sharing stories about medications, and creating a safe space to talk without judgement. 

Just a few of my thoughts and I'd love to hear other people thoughts and experiences with schizophrenia! 

Thanks again @Miss-wish 

Take care

RiverSeal

[Miss-wish]

@RiverSeal Thank you for sharing your lived experience with schizophrenia, I didn't know most of what you said. I think that TV and media have made it hard for people they see as "different" and don't understand casting them in a bad light.

All we can do is try to set it straight here and hopefully help people understand, and reduce the misinformation. 😊

[Eden1919]

@Miss-wish  I have schizoaffective disorder so for me that means i essentially have both bipolar and schizophrenia. 

Everyone's lived experience is different. What do you see as myth or fact in your experience?

for me it is a myth that medication works for everyone and that you will be fine if you just find the right meds. meds can help some people but i am treatment resistant and have major issues with side effects of every med i try sometimes meds cause more harm than good and it isnt as simple as taking a few tablets. but also people will assume that if you are off meds you are dangerous and uncontrollable that isnt the case either everyone is different and what works for one person wont work for another. 

What are carers experience looking after/ helping/ loving people with Schizophrenia? 

for my family it has been hard there have been times i have acted in ways that were distressing for everyone involved but having their support is super important and has allowed me to continue trying to pursue my dreams. 

What are the things you think people should know? 

personally i wish people knew how much of a struggle it is everyday just to exist i struggle a lot with basic everyday tasks including hygiene stuff and it is exhausting just to keep myself alive each day by that i mean doing daily living things let alone things i enjoy or work or study in my case it can be difficult just to survive. 

How can people help others with Schizophrenia?

there are many ways others could help. being more compassionate and understanding is a start and making space for people with schizophrenia to talk openly about their experiences without fear of shame and discrimination all too often i will join a "safe mental health community" only to be told my experiences are too scary or i am not welcome to talk about them and they are not relatable. also not treating us like children who know nothing we are experts in our own suffering and we dont need people to treat us like we dont know anything.  

[Jynx]

Amazing idea @Miss-wish, and thank you so much for sharing @Eden1919 and @RiverSeal. I always find it so immeasurably valuable to read others' stories and experiences, and especially their insights into how to navigate this big, confusing world when also living with complex mental health. Incredible contributions from everyone 💜

[Miss-wish]

Hi @Eden1919 and thank you for your comment 😊,  a diagnosis can be hard to deal with but a complex one can be even harder. I hope you have a support group around you that truly understands you and listens to what you say you need. I have a slight understanding, not of your  schizoaffective disorder, but of people not understanding, listening or being general A-holes who think they know better. 

Thank you for your insight of you and a small look into what you deal with, is there anything you would like people to know, outside of the questions asked? any tips that have helped? being in a quiet place, shouting, loud music, standing in the shower with a shower cap on- over the ears and the water running over your head? the last one warks with me kids to calm them down. 

sending virtual hugs  

[Miss-wish]

Hi @Jynx, 

Thank you 😊I'm hoping a post will be started for everything, I want to kick some untruths in the butt and help as many people we can, to know they are not alone, help family members understand their loved ones more and see the other side point of view from someone else that is dealing with the issue. 

Lets open this tin can from our perspective and not always seeing it from people that have never actual experienced it themselves. ok stepping off the soap box now  😁

[Eden1919]

@Miss-wish  there is no one coping tip that will work for everyone so it is important that everyone finds what works for them. idk there are lots of things i wish people knew but i am finding it hard to put that into words right now maybe i will come back later and try. 

[Miss-wish]

@Eden1919 whenever you are ready, we will be here to listen. 

I was thinking that what helps you, might also help someone else. The shower cap tip is something someone suggested to me after my kids wouldn't settle down of a night, and trust me they are getting to big to turn upside-down to " reset their brains" as someone explained to me how it helped them. I think I need monkey bars for that now. 

Someone might like to try as they have tried everything else they can think of. Or someone with another mental health issue might find it handy. but please know that there is never any pressure to say/ tell us anything. It is always your choice. 

My 24yo daughter finds it hard to know what she is feeling and definitely doesn't know how to put it into words, sometimes it can be too much to think about for anyone. 

Thank you again for giving me an insight into the complex world you live.

[PinkFlamingo]

Great topic idea @Miss-wish 😀

The one thing I would like to add is that from what I have experienced, there is little flexibility in society when it comes to people of all different backgrounds being able to find a valued 'place'; stigma, media, uninformed fears, etc, all impact on the ability to exercise freedoms like being a part of work, community, and education (to name a few). 

Now if we could just get the powers-that-be to read this thread and the future topics to come, we would surely be on a winner, I reckon! 🙌😀

Thank you very much for your stories and comments @RiverSeal @Eden1919 @Jynx , its a privilege 💜