Hearing voices and psychosis 🗯️

[RiverSeal]

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, and I also did the Lived Experience of Hearing Voices Webinar in late 2024, and the Topic Tuesday, Living a Meaningful Life with Schizophrenia, in mid-2022. 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 @Dreamy @Eden @creative_writer 

[NoWayBack]

Thankyou for your post, I look forward to checking out the links you posted and responding on the thread when I can get half an hour to myself 💖🌈

[Dimity]

Thanks heaps for starting this thread and sharing your story @RiverSeal .

My journey with psychosis officially started over 40 years ago and I've had a number of relapses. In a psychotic episode I'm delusional with vivid impressions I think at the time are memories although I can  usually tell fact from delusion in hindsight after I've recovered. I'm also confused, misinterpreting things, and somewhat paranoid.

My diagnosis has evolved from schizophrenia to BPD to bipolar. I've had a lot of depression and at times have also sought help with anxiety and c-ptsd. I've only recognised the c-ptsd recently but it's played a big role in my life. I've also had SI and a couple of attempts.

I've been on many different meds over the years but have been on the same antipsychotic for over 20 years. Managing side effects is onerous at times and I'm resigned to some of the morbidities and likely early mortality - topics that are often taboo or glossed over.

I've noticed that the commonest questions about psychosis from new contributors relate to caring for loved ones showing signs of psychosis. If we as a community can help workshop some answers it would be great. And it could help us help ourselves.

@Eden1919 you might be interested in this thread. (Hope you're going OK.)

[Dimity]

PS I did hear voices for a short while in the very early days - but I was on a problematic med and also suffering parkinsonism and when the med was changed the voices stopped.

[Ed1975]

How do we know that the voices we hear and the things we see aren't real? It's easy to say, "you're having a mental episode" but are we? 

I've been seeing things others couldn't as a child and through my life and also recently. Hearing sh*t too. Why do we automatically presume "mental episodes"?

Could something else be at play here? Something we just cannot comprehend or understand? Can some people see or hear things others cannot?

We can't see wifi signals, air we breath, sound, etc... but it exists. Just like insects being able to see different colour spectrums that we can't see. Doesn't mean they're not there.

Its always baffled me when people say, "it's your imagination" when you see something standing in front of you that they can't, but yet the people who say that have never had that happen to them. 

Are some people able to see what others can't? 

It has always interested me.

[Ed1975]

@Eden1919 hey, [edited by moderator]. I've only ever met a few Eden's in my life.

[Dimity]

@Ed1975 sure, some people experience synaesthesia for instance

[Bunniekins]

@Ed1975  hi Ed1975 "Are some people able to see what others can't? "i can and so can my son .  he saw his vision when he was about 3.  he was firstly diagnosed at 5 with early childhood schizophrenia then fully diagnosed when he was 16.  i would put him in the bath and he would start screaming about an eye above him.

[Patchworks]

Thanks for the tag @RiverSeal 

My first psychosis was in 1993, yes 32yrs ago when I was a young adult. I've had various hallucinations, auditory, visual, olfactory. I've had multiple psychosis episodes and hospital admissions over the decades. I too have schizophrenia or schizoaffective disorder as I also experience depression.

My recovery has been a journey of ups and downs but overall a line of progress. I have managed to study and work, I was married for a long time and from that I have two beautiful children who are nearly young adults now! 

I have struggled with medication side effects too and also worry about my possible shortened life expectancy. Ive gained weight, have had tremors (taking another medicine for that now) and I still struggle with motivation. Having said all that, the medication has saved my life. Ive taken antipsychotics and antidepressants over the years and remain on an injectible long acting antipsychotic now.

If I was talking to someone new to a diagnosis or a family member of someone who has been diagnosed with schizophrenia... I'd say research and find out about the illness to understand what you/your family member is going through. Lack of understanding can break relationships if ppl don't separate what is the illness and what is the person. It's an illness that impacts nearly every facet of your life so insight and understanding is so important.

My recovery has been helped mostly by loving and supportive family and friends, medication and a determination to not let this bring me down. It's not an easy journey, actually it's really shi**y but there's beauty in recovery.

I have relied on doctors, forums, support groups and case managers throughout my recovery. And information, I'm always reading about the latest research and approaches. 

The silver lining for me is an empathy for other people with struggles, from which I hope I can help others

[Ed1975]

@Bunniekins that's my point. Why when a child sees things do we diagnose with schizophrenia for instance. Maybe kids see things we as adults do not. Ever seen a baby just looking into space and laughing at something that isn't there.