Schizophrenia Awareness Week: Share your story

one of the main difficulties in dealing with schizophrenia is that many people perceive it as an illness characterised by violence and incoherent ravings. You are never perceived as being a gentle caring person.

You are, to a lot of people, invisible and of no value.

For me, it did create a different person than how I was born, however as I developed it so early in life, to me the changes were difficult to measure.

Voices, mood swings and delusions and hallucinations play out their effect so constantly, that they become part of the essence of who you are.

Recovery from every major episode is a celebration of endurance.

It is almost impossible to communicate to people without schizophrenia, including health professionals, the daunting effort needed to confront the challenges thrown up by the illness, usually every day.

Some days there is no hope, whilst others offer renewal.

Living with and surviving schizophrenia is a testament to the endurance and strength of character needed to mange the best and worst of it.

It would be a great achievement if public understanding and support for those with schizophrenia became the norm, not characterised by the significant ignorance that exists from all levels of society at present.

kenny

My twin brother who lives in the UK suffers from Schizophrenia - and has done since he was in his early twenties. It was denied originally by my parents and I was asked to talk to him to try and get him to see sense.

Being a twin has been a challenge - we were extremely premature, and my brother 'died' 3 times the day we were born. We were not allowed to go home and were in incubators for a long period of time.

I suffer from OCD and was only diagnosed a couple of years ago, although I know I've been living with this condition since I was in my late teens.

Although my brother lives what he feels is a good life, it isn't what I'd like for him, and would love to be able to do more for him in the UK. However he lives in shared accommodation with another person with Schizophrenia and does the best he can. I do what I can, and we are in contact every couple of days by phone. Schizophrenia and OCD are both conditions that are misunderstood and the more we can share stories I feel will help break down the stigma attached to 'mental illness'.

Hi That's a pretty amazing coincidence.

I have a twin sister and we were really premmies. I was tiny and my sister was really plump and heavy when we were born. I also live with a schizophrenic

My sister doesn't have a MI. My family disowned me when they found out I was schizophrenic and I was abused at home so I have no contact with them.

Sometimes I find with schizophrenia that I really have to make my own way and live with what I am comfortable with.

A lot of people including health professionals don't understand that I can be happy living in my world, no matter how different it is.

schizophrenia is all about managing negative symptoms and concentrating on the positives. Your brother is very lucky having a supportive and loving sister.

Kenny

Sandy Jeffs is an inspiration. Her book "Flying with Paper Wings" gives important insight into schizophrenia and its treatment in the 70s in particular. It also provides very insightful and beautiful poetry, which paints the illness and the reality for those who live with it.

To raise awareness of schizophrenia, we want to 'open the floor' to those of you who have been diagnosed with schizophrenia, to share your story, and educate people on what it's like to experience the symptoms of schizophrenia, what inspires you, and your hopes for the future.

1) My experience with schizophrenia

I am not sure where to begin because its an intertwined web of meaning and coincidences that all tie together to some grand narrative of which I was the star (actually, I was the queen of Australia). Its where people can read minds, predict the future and the radio and TV talk directly to you through symbolism and connections among otherwise innocuous things. I thought I saw people getting younger instead of older. I thought there was a hologram above my head where people could read my thoughts. I thought everything had a double meaning, for example when they said they were "concerned" at work, I thought it meant it was partially their doing rather than them being worried. I had grand ideas I was a secret queen because I had cracked the code of what it all meant. I rang everyone I knew on my phone to see whether they understood the new order. I wrote the new order on the walls of my house in permanent marker. I self-medicated with alcohol completely in denial of my illness. I thought people had secret messages for me in inane conversation, or conversations they were having with others. I cried a lot. I thought my phone was bugged one time, and I really believed I wasn't ill - that I had worked out the meaning of it all. Then I ran away from everything thinking "they" were coming to get me.

Sometimes now I get a bit like this, when I am anxious. Sometimes everything connects up and I get scared. The double meanings and strange ideas come back. But I bounce ideas off the people around me (my family) who question it - paranoia, delusions and hullcinations, which I now can label because of my diagnosis. So that is a good thing. I take medication too.

2) What inspires me

"Out and proud schizophrenics" inspire me - those who do talk openly about it, who maintain a self-belief bigger than thier diagnosis - in doing this they destigmatise an illness that people are often scared of.

3) Hopes for the future

I hope that schizoprenia becomes as accepted in the community and workplaces as just any other illness.

I hope that I can help others with metal illness. I plan to study to do so next year.

I also loved that book @Rosie.

Hope to see you tomorrow night for TT, which is in acknowledgment of schizophrenia week.

Hi Kenny,

what a coincidence - although I was the heaviest I was still only 2lbs so very tiny. And yes, I couldn't agree more with your comments - it's all about what makes you happiest.

Be kind to yourself,

Grace

Hi @Grace , @kenny66 and @Rosie

Thank you so much for sharing your stories and experiences.

I truly believe the more we talk and share our own unique experiences, the more awareness and understanding we bring to the community.

I wanted to let you all know that this coming Tuesday (26 May) at 7pm (AEST) we are hosting a Topic Tuesday in the Carers Forum about psychosis.

If you feel comfortable talking about episodes and your experiences, we would love for you to join the conversation and give carers an insight into your experiences.

The aim is for carers to share their experiences and hear from others about -

• Noticing symptoms during the onset of an episode
• Care plans to manage episodes
• Tips for working with psychotic symptoms

@Rosie & @kenny66 - I think hearing from those with lived experience is critical and carers hear first hand the impact of psychosis and also perhaps what helps when you've had an episode in the past. So if you feel comfortable, you're more than welcome to join the discussion.

Obviously this is open to anyone who feels comfortable sharing their experiences.

It starts at 7pm AEST this Tuesday (26 May) - the link to the discussion is here

I will be happy to talk about psychotic episodes and what happens when you go through them and the warning signs.

Kenny