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Hearing voices and psychosis 🗯️

Hearing voices and psychosis 🗯️

Hey Forums friends,

If you are like me and you have experienced hearing voices and maybe even had a psychotic episode, then this is a thread to share your experiences and have discussions!

I have shared some of my story and recovery journey here in responding to Members. My mental health experience is hearing voices and experiencing delusions. I have had many psychotic episodes and been on the mental health ward many times, diagnosed with schizophrenia in 2016 after 9 years of misdiagnosis (Borderline Personality Disorder with drug-induced psychosis), been on the DSP, and I am an NDIS participant. In 2017, I started studying at TAFE and I now have 6 qualifications in NDIS, Community Services, Alcohol and Other Drugs, Sexual Violence and Mental Health Peer Work. I work with people who experience complex mental health, AOD, and gender identity issues and use my lived experience to provide peer support.

Most of the challenges I have experienced happened over 9 years, from 2007 to 2016, when I started experiencing psychotic episodes and presenting to ED at least 9 times, resulting in 7 hospital mental health ward admissions. However, in late 2001, I was overseas and had a breakdown which led to AOD misuse, unstable housing and extremely heightened emotions for 1 year until I returned to Melbourne. On my return to Melbourne, I misused AOD, and even though I worked several jobs to get by, I was experiencing many other life challenges, anxiety, and depression. As a result of my first psychotic episode in 2007, I lost my long-term girlfriend, career, job, I put on a lot of weight from the antipsychotics, started smoking and lost my fitness, lost my passion for mountain biking, swimming and the gym and had to go bankrupt. In 2009, after my second psychotic episode, I mostly gave up misusing AOD and started working with a. psychiatrist and taking my antipsychotic as prescribed, but was not very engaged in my treatment as I believed the alternate reality that was my voices and delusions.

In 2016, I had a turning point in my life and started my recovery journey with what at the time seemed like an insurmountable challenge. I had my diagnosis changed from BPD with drug-induced psychosis to schizophrenia, and I thought that my life was over. I only knew the stigma and discrimination that I had heard, and I thought that if I had schizophrenia, I was not in a good position to put it politely. I went home and looked up schizophrenia online, and I immediately identified with the diagnosis as it sounded like someone had written about my life. I literally thought that if I could sit on a couch and watch TV, that was what I expected I could do for the rest of my life, if I was lucky. Somewhere deep inside me I was not willing to accept this and I engaged with my treating team, researched everything I could find about schizophrenia, watched endless YouTube videos on other people and recovery stories, took my medication as prescribed and made countless mistakes trying to find a way to exist in the loneliness and isolation that was my life living interstate from my family and having been abandoned by people I used to call friends.

My recovery journey from that place I was not willing to accept feels like wading through water, not knowing what direction the shore is in, how far it is, or how long it will take to get there. I’m still not there, and I believe I will be in recovery for the rest of my life. Along the way, I have met some people who supported me, believed in me and gave me opportunities. I have also had even some of the same people and others say the cruellest and most insensitive things, holding me back by not accepting that I am creating a new life that is meaningful and purposeful. I learned that I truly need to believe in myself and my abilities, hone in on my values and beliefs, and never accept less than what I deserve. Recovery is so hard and so challenging, and to walk the recovery journey path, you just need to put one foot in front of the other and keep moving forward, and it will reveal what is uniquely your experience.

As you might be able to imagine, over 20 + years, there were many challenging situations, not to mention that I was also trying to process my gender identity, as I identify as a transgender woman. This is really just in a nutshell to keep it from being an essay, so please ask questions and be curious if there is anything that you want to understand more deeply!

Let’s create some discussion, and here are some questions (but not limited to) to get us started:

  • What are some of the challenges you are facing in your recovery?

  • What supports, services and resources do you regularly engage with in your recovery?

  • What does recovery look like to you?

  • What have you learned in recovery that may support another Member?

We also want to hear about your experiences, so if you feel comfortable, please share your story, your challenges and what you have learned!

We all have it within ourselves to live a meaningful and fulfilling life with or without symptoms 

RiverSeal ❤️

Just tagging in some Members who may be interested in this thread!!

@Egonza @Patchworks @maddison @Millielulu @TAB @A0ri021 @LW1969 @Elisena

@Judi9877 @Eve7 @StuF @Meredyth49 @DIDJane @Dk5 @MissRenae08

@MeerkatMonsta @Hope @recovery @Libra @Cleo2 @Jaybee12321 @sol_87

@Paperdaisy @MDT @boofhead73 @Anon1975 @Bunniekins @Hemlock @Krishna

@Dimity @MissGremlin @Eden @creative_writer

71 replies

21 - 30 of 71

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Hello

This is a really thorough post and what is the highlight for me to read your post is the acceptance and sharing that you seem comfortable to do.

I am brand new to all this and joined today to seek support as my partner has just been diagnosed with psychosis. I am having a challenging time and want to speak to those that have a carer role like myself, and I’d also love to continue to chat to those that have been diagnosed with psychosis. The last 4 days have been horrendously heavy with guilt and sadness for my partner. My aim is to be educated, be supported and be prepared for when the times comes for my partner to safely leave hospital.

Thank you for this forum existing.

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

  • "What are some of the challenges you are facing in your recovery?"

I'm in a better place now. But a huge barrier, or barriers mostly between 2015 and 2022 was the wrong care team. I have since found better providers who afford me more autonomy

There is still some back and forth contradictions with the specifics of my diagnosis

  • "What supports, services and resources do you regularly engage with in your recovery?"

-I have a great psychologist. Who I see every 2-3 weeks. She utilises Somatic, Emotions Focused and Cognitive Approaches. We do a lot of Internal Family Systems (IFS) and Focusing Oriented Therapy

-My GP formerly worked in psychiatry for 25 years, prior to retraining in general practice. So he is capable of managing my medications

-I've been attending monthly Hearing Voices groups for the last 3 months. Most recently tonight

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

@RiverSeal sorry i was trying to tag other people but it wont let me for some reason anyway hello everyone this is an interesting discussion, personally I don’t think it matter where the voices are coming from but if they are causing distress or not and if you can live a happy live with them or not i think the end goal should always be quality of life however that looks can be different for different people.

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Hey @Taimoor, thanks for sharing your experiences with the community!

It takes real courage to be vulnerable and share our challenges with the community, and you are demonstrating that you are brave and courageous.

Sorry to hear that you were bullied, and that is never ok, as a kid or an adult. I'm so glad that you have found the Forums, which are a safe space to be open and honest with our peers.

I'm curious whether you have seen our introductions thread here https://saneforums.org/t5/Welcome-and-getting-started/Welcome-Introduce-yourself-here/m-p/1149480 as it would reach a lot of Members!

Take care

RiverSeal

In response to: Re: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Hey @PsychosisCarer thank you for sharing your experiences with the community!

It sounds like you are going through a tough time with your partner in the hospital, and having been diagnosed with psychosis. Hospital can be a challenging time, and dealing with psychosis can feel overwhelming. It takes courage to share what you and your partner are going through, and you are being really brave by being vulnerable with your peers.

I'm curious whether you have any questions you want to ask the community in this thread? It is a great place for Members to share insights and experiences with each other. I encourage you to use this thread as it is intended to learn and share with each other.

There is some support for carers that you may be interested in taking a look at here https://www.healthdirect.gov.au/partners/carers-victoria.

Thanks again for sharing your eperiences with the community!

Take care

RiverSeal

In response to: Re: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Hey @DogMan79, thanks for sharing in the thread!

Yes, it's important to have the right care team as often we don't get the support we expect or need from some workers and services. And it's your right to ask for someone else or to be referred to somewhere else too. So glad that you are now getting support with more automany now.

It can be hard to get the right diagnosis and particularly with psychosis, as there are many diagnoses that it can relate to. And sometimes you need to know the history of a person's experiences and symptoms to really understand them. It's quite common for diagnoses to change over time and with different psychiatrists, and it happened with me too.

So please to hear that you are working with a psychologist with various therapies. It can be really benefical to work on these to support us in our recovery journies! And the hearing voices group is so good and I hope you are getting something out of that. I believe that hearing voices groups are a great space to share and reduce isolation.

Thanks again for shaing!

Take care

RiverSeal

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis

That's a really interesting experience you had @Former-Member and I can understand your dismissiveness and not having concern about your grandmother. People hearing voices and seeing things have been around forever and are not new experiences. There are many explanations and beliefs for these experiences, and different communities throughout time have not always viewed them as something to be feared or a mental health issue. Thanks for sharing!! RiverSeal ❤️

In response to: Re: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Agree @Eden1919, everyone's recovery will look different and living with the voices and having a meaningful and fulfilling life is a great outcome. Different experiences might come and go, so learning to live with them rather than fighting against them. RiverSeal ❤️

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Hey @Appleblossom, great to hear your perspective and your experiences with both parents diagnosed with schizophrenia. I can understand how you would have developed an open curiosity at a young age. That would have given you a lot of insight not only into your parent's experiences but to your own transcendental experiences.

I think our views can change over time, and it sounds like you were more connected with the medical model at a young age, but have grown and found your own explanations. Having coroner's reports sounds overwhelming, and it's good to hear that you are no longer intimidated by their content.

I think other knowledges and particularly lived experience has a lot to contribue to understanding hearing voices and psychosis. Considering the medical model is based on therory and prescribing medications which may or may not help someone but come with a lot of side effects.

I believe I will be in recovery for the rest of my life even though I am on a clear tradgectory upwards and onwards. One of the main reasons is because of how people treat me and what they think about my lifes experiences. It makes it hard to put my MH experiences behind me and move on fully.

Thanks again for sharing your story and adding to this conversation!

RiverSeal ❤️

In response to: Hearing voices and psychosis 🗯️

Re: Hearing voices and psychosis 🗯️

Hey @Dimity, thank you for sharing your story with us!

Sounds like you have been going through this for a long time and have good insight into your experiences. I get delusions, and the narrative of my psychotic episodes creeps in sometimes, but I am aware of what's going on and that it's delusional thinking. It's more like daydreaming for me now, and I don't believe it like when I lost touch with reality.

From what I have learned, it can be quite common to have diagnoses changed over time, and it happened to me too. Schizophrenia is a spectrum disorder and is not all about psychotic symptoms, but they can often be present when we come into contact with MH services.

That's good to hear that you have been on the same antipsychotic for 20 years as the one I take works really well for me and I have been on it for 9 years. I am not interested in changing so I hope there is no reason for me to have to consider it in the future. Gaining weight is my biggest side effect and I am concern how that plays into my life expectancy. I really struggle with exercise where that was not an issues before I had psychocis nearly 20 years ago.

I love the idea of creating a space to support carers of people hearing voices and psychosis!! Amazing idea 💡 Though carers are welcome in this thread and reading about other peoples experiences my be beneficial too.

Take care

RiverSeal

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