Schizophrenia Awareness Week CONNECTING WITH HOPE

[Paperdaisy]

Schizophrenia Awareness Week CONNECTING WITH HOPE

People living with schizophrenia are some of the most stigmatised and marginalised people in the community. At SANE we aim to reduce stigma, encourage inclusivity, and promote help seeking through discussion, shared experiences, and peer support.

Schizophrenia Awareness Week aims to shed light upon the experience of those living with schizophrenia. The 2022 theme is Connecting with Hope, and we want to start a discussion with this in mind. Through connection and shared experiences, we can foster hope for those living with schizophrenia and their carers or loved ones.

How can you be involved?

💝 We want to invite you to share your experiences and stories of recovery and hope in this space 💝

At the end of the month, our team would like to invite you to the peer-led discussion ‘Living a Meaningful and Fulfilling Life With Schizophrenia’ with peer support worker @RiverSeal 

This will be a safe space to talk about schizophrenia, make connections and share experiences. Please join via the link here

Tagging some members of the community who may be interested in joining the discussion

@Hello_ @Krishna  @Anon1975 @Patchworks @greenpea @Emelia8 @Shaz51 @StuF @Eden1919 @Mellymead @maddison @Appleblossom @NatureLover @MDT @Rosie @TideisTurning @Former-Member 

Further resources 🌼

Living well with schizophrenia

Hearing voices support group available online via zoom

Living well with Schizophrenia- This channel shares great resources

MIFWA Events

SANE Forums 🌼

My Schizophrenia 

Interacting with and caring for family member 

Previous Topic Tuesday-Let's talk about schizophrenia 

Please help keep this a safe and respectful space by following the SANE guidelines. If at any time this content is distressing, please reach out to Lifeline or the SANE counsellors.

Thank you 🌼 🌼 🌼

[Rosie]

Recovery and Hope

Hi everyone, thanks for having an event for Schizophrenia Awareness Week in 2022! It means so much to me.

Schizophrenia is such a debilitating and awful complex mental illness that is highly stigmatised. This can be very distressing for anyone going through it. I have lived through so much of the crap that comes with a diagnosis of Schizophrenia and it isn't easy, but I am lucky enough to say, with treatment, I am in recovery.

I love posting about recovery, because in my experience, it is possible - even though when I was in psychosis and a little bit after those times, I really thought this was it, no getting well, I had to live with false beliefs and delusions forever. I couldn't see any way out of it. It made me angry and it caused me a great deal of pain. I also had really negative beliefs about myself - a kind of internalised stigma. That I was 'less than', 'not as able', or 'defective'. These beliefs about myself were so limiting, they pop up now and then, but not like before. I am so grateful to the disability community who stand up for difference and make it ok to be whoever you are.

My last psychosis, I am pleased to say, was at the end of 2018. I went 'weird'. I stopped talking. I started thinking I was in on a secret that not many people were in on. The secret was pretty special, I was the secret Queen of Australia, but only some people knew - people who could read my mind and people on the television. The radio played songs specifically for me and the presenters had special messages for me. I was going to get married to a celebrity (because I could see all the signs) so I ordered a wedding dress online. I bought all kinds of things relating to this delusion, subsequently putting me into a great deal of debt. I stopped talking to my family because they weren't in on the secret. I told them where to go - swearing at them when they were trying to help. I was in complete denial, well maybe it wasn't denial, it was just schizophrenia - that you have false beliefs even when you are presented with evidence that proves them wrong.

It destroyed my life, again. I have been through so many cycles of this! I get sick or go off my medication, lose my relationships, get into debt, move towns, change jobs or lose my job, find some insight somehow and go back on my medication, recover and then go off my medication because I'm feeling good. Repeat. Repeat. Repeat. I have been through this enough times to now know that I have to take medication for the rest of my life. I have been on a high dose of anti-psychotics since 2019 (and also stopped drinking alcohol) and I have not had any symptoms of psychosis since then. I do not want it AT ALL. I have to stick to my six monthly appointments with the psychiatrist and see my GP often. I have had trouble with my weight which I am still working on, but I know exercise makes me feel good, so I do a lot of that. I know I still have issues with my weight and eating, but it's a lot easier dealing with them than being psychotic as well!

I know it can come back, so I try to reduce my exposure to stressful events which can be a trigger for me. I just keep taking my meds, morning and night. Morning and night, every day. I need to, it's imperative.

I have other dramas that Schizophrenia has caused. Dating and finding romance has been hard, well, letting them into my past is hard. I tried admitting to work I had it, and they made it hard for me to get permanency, resulting in me having to lie about any pre existing conditions. Making excuses about why I had to leave jobs and towns and start in new ones. Not having kids because my medication is really complicated and it just seems too hard to be pregnant on it. These are things that I find difficult.

Other than that, I count my blessings! I have a sound mind. I have a good job. I can support myself. I have a boyfriend. I have bought (a very modest) house. I play sport on the weekends. I don't drink and cause myself trouble like I used to. My life is pretty great.

I have had to hold onto hope a lot to get to where I am, and I also hold on to hope consistently that I will not get sick again, or like I used to. I hope too, that I can help others by sharing about my experience.

Love,

Rosie

[Paperdaisy]

Thank you @Rosie for sharing your story. You write with such hope and clarity that I chose your story from last year to share in this thread. You seem very committed to your recovery, which is admirable. It isn't easy but you're doing so well and you're an inspiration to all.  

I would like to highlight the second last paragraph as it provides so much hope! 🙌 

"Other than that, I count my blessings! I have a sound mind. I have a good job. I can support myself. I have a boyfriend. I have bought (a very modest) house. I play sport on the weekends. I don't drink and cause myself trouble like I used to. My life is pretty great."

Thank you again for sharing. Your story is very powerful 💝 🦋

[Patchworks]

Thanks for this thread and spreading hope in what can be a desolate illness. I was first psychotic at 19 years of age then diagnosed with schizophrenia in my early twenties. My first psychosis was impossible to comprehend as I became so separated from reality. I don't think I really understood that for years, until subsequent psychoses and recovery. Living through psychoses is the scariest experience of my life, in a horrific way. I wouldn't wish it on anyone. It breaks you apart and leaves you picking up what pieces are left. I've had varying experiences from identity crises to existential crises mixed up in my illness. The devastating impact it's had on my life has brought me to also suffer depression,  usually post-psychotic depression. I'm now living with a diagnosis of schizoaffective disorder with melancholic depression.

Despite this dreary sounding story, I've always found my way through.

The stigma of this illness is slowly improving. People are more open to talk about their mental health now and that's so great. 

I've had several times with little or no hope but somehow I've always made my way back to wellness. Recovery is a constant process as the illness can trick me into feeling better and going off medication, only to fall ill again. I, like @Rosie , now realise I will be on medication for the rest of my life. I also have stopped drinking alcohol and I don't miss it. Other than those factors, my recovery has been helped by my family support which I am lucky and grateful for. I have few friends but cherish the ones I do.

In amongst the decades of illness, I have married, had two children and studied to graduate with a degree  a masters and a graduate certificate. I did stay off medication for my pregnancies and breastfeeding, so it is possible. There is a lot more hope for people who live with a diagnosis of schizophrenia these days as the medication and therapies are improving. 

[Rosie]

Thank you for this post @Patchworks ! Inspiring and true. Thanks for your experience. I loved that you added about having children, it’s great to know. You’re right about always coming back to wellness. It’s so strange how it happens after a psychosis… I often wonder how I get through the awful part of coming out of one. It’s so horrible.

Another point you made was that the stigma is improving. You’re right.

Thanks again.

[Paperdaisy]

I second that @Rosie very inspiring @Patchworks Thank you for sharing your story with us. You show a lot of resilience and as you said you always make your way back to wellness, which I think provides a great deal of hope to others who may be struggling right now 💛 Thank you 

[BPDSurvivor]

Thanks for opening up this thread to share stories @Paperdaisy because it’s one area I know very little about.

Looking forward to hearing people’s stories.

BPDSurvivor 

[Judi9877]

Hi there @Paperdaisy and all forumites here. Thanks very much for spreading the news about Schizophrenia Awareness Week this week! I didn’t even know about it despite having schizophrenia as one of my mental illnesses. 

To be honest, whilst I’ve found schizophrenia to be a scary illness at times from my personal experience, I’ve also found it to be very comforting at times if that’s even possible to have. I’ve found that at times, my schizophrenia has allowed me to be very creative and to express myself though writing and drawing abstract pieces and I’ve noticed that I love bright colours. I’ve found the voices to be at times scary yet equally safe and comforting if I accept them for just being voices  and nothing more. There have been times whereby I’ve preferred to listen to the voices over having normal conversations but that is rare for me and something that doesn’t happen often. I did have an admission to hospital last September over my schizophrenia which was brought on by the stress of Melbourne being in lockdown and I have noticed that my schizophrenia symptoms are worse when I’m stressed out so this is something I have to be aware of and pay attention to.

I do believe there is hope with schizophrenia and that there are a lot of good things to come from having schizophrenia as a mental health diagnosis. Not all people with schizophrenia are dangerous or scary. In fact, there are lots of great people out there who have the mental illness and with whom are thriving in the community. It’s just a matter of seeing the good things about the illness that is important to see and recognise.

I look forward to seeing what other forum members have to say about this condition during this important week of celebration.

Judi9877☺️💐

[hanami]

Hi @Judi9877 

Thank you for sharing your story about your experience with schizophrenia. I don't know a lot about it so love to read about peoples' experiences. I feel that it is still very much stigmatised in the general population due to portrayals in the media. I hope to hear more stories this week!

hanami 💮

[greenpea]

schitzoaffective disorder means shaking hands from purple pill. memory loss ...... honestly forgot the word olive the other day ..... unable to work, gaining weight.  Having a voice who was once there now is gone ..... lonely.