Lived Experience Forum

[RiverSeal]

I guess the first thing for me was self-stigma when I was diagnosed. About my own knowledge of what schizophrenia was and what my own experience with it. I think acknowledging that was my first exposure to public perceptions and similarly with my family. The reactions from friends were more impacting and less forgiving and ultimately drove a wedge between my relationships. This took a long time with many hurdles to overcome the feelings of rejection and loss. I learned to create boundaries with people I meet to not disclose to protect myself the enable me to engage on an equal social level.  

I hear similar stories in the work I do supporting people who hear voices, working in the mental health sector. The media have portrayed people with schizophrenia poorly without really understanding the broader impact of the people who experience it. Public perceptions don’t allow for the distress and the suffering that people endure but create unnecessary expectations. Isolation and lack of connection to community impact people more that the impact of symptoms in many cases. There are many people who manage to navigate life while still experiencing symptoms who live meaningful and fulfilling lives. 

Introduction to Living Well with Schizophrenia:  

• YouTube channel 

Is A Beautiful Mind an Accurate Portrayal of Schizophrenia? 

[maddison]

I think I can perhaps understand what you are saying @RiverSeal in regards to symptoms being over generalised. Perhaps it is part of the stigma carried with diagnosis of schizophrenia.

My friend, I think has possibly felt 'labeled' by his diagnosis.

My interpretation of hope would include things like "acceptance" & not being defined by diagnosis.

[TideisTurning]

It can help us to feel less alone when we know of others living with schizophrenia. 

For @RiverSeal  and the community: 

Are you aware of any public figures who live with schizophrenia? 

[TideisTurning]

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@maddison wrote:

My interpretation of hope would include things like "acceptance" & not being defined by diagnosis.

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Love this @maddison ❤️

[Elisena]

I am so disappointed with the way the media portrays people with schizophrenia. The only stories you see on the News and in newspapers are stories where someone has entered the street carrying a weapon into the street or committed a violent crime or behaved in a way that has disturbed the general population. The media always delight in telling everyone these people have schizophrenia or another mental illness. I feel so angry when this happens. All they care about is the sensationalism of the news story and this creates further stigma. Some movies are hopeless with this as well. 

When I struggled to admit to myself for the first time that I was hearing voices, my first thought was that I had schizophrenia. I was terrified because all I knew about it were what I had seen in movies and the news. All I could imagine was that if I went to a doctor I would be locked away for months and months. I pictured padded cells and injections and ECT. Shock treatment. I was already in a state of shock. I didn’t go to a doctor for over a year. I became a recluse.

[Judi9877]

Hi there and good evening @TideisTurning @maddison @RiverSeal @Elisena @LW1969 and everyone joining here tonight. I’m a bit late to the party I’m afraid as I forgot it was on. Sorry about that!

I’m in my mid 40s and have had schizophrenia for at least 20 years with a diagnosis coming on when I was 26 or so. I have had a recent hospital admission in September last year due to paranoia and psychosis involving the lockdowns Melbourne was having at that period in time as I couldn’t cope. I find my schizophrenia to be episodic and it really affects me when I’m stressed or get anxious about something that I feel that I can’t control properly. That along with my other mental health conditions which are depression and BPD.

I find that people treat schizophrenia as if it’s some sort of scary Hollywood type movie condition where all people who have schizophrenia are dangerous and not safe. In reality, some people with the condition can be quite quiet and try to not draw attention to themselves, especially when they are experiencing an episode. That tends to be like me who tries to internalise my episodes which happen to include hearing voices and having conversations with them in preference to dealing with my friends and family. 

I hope this is okay?

Judi9877

[RiverSeal]

Thank you for your reply @Elisena!

Yes, work can be really challenging to find a employer that supports you and your experiences. It's amazing that you have that goal and you are actively volunteering with horses and a young person. Keep working towards your goal and focus on what you can control to live life in your preferred way.
Goals and hope are really important in recovery so do believe in yourself and keep working on what's important to you. Reading about mental health is a great way to improve your knowledge and learn about your experiences. It can go a long way to improving your symptoms as your psychiatrist has said that some people can improve with time. 

Thank you again for your response to the discussion!! 

[maddison]

I absolutely agree with you @Elisena . I feel the same way about media portrayal. I'm sorry you had to go through this💜

[RiverSeal]

There are two people who I find the most influential who experience schizophrenia. They are Lauren from Living Well with Schizophrenia and Cecilia McGough the founder of Students with Psychosis. Both still have symptoms but have found a way to live a meaningful and fulfilling life by supporting other people by using their personal experiences. But it doesn’t stop here, Eleanor Longden is a Clinical Psychologist who started hearing voices while at university and faced many challenges that we all have experienced. Elyn Saks lives with schizophrenia and is a Professor of Law at the University of Southern California Gould Law School. 

Please take a look at some links with some famous people who experience schizophrenia. 

[Eve7]

I can really relate to what you have said @Judi9877  thank you for sharing.