Topic Tuesday// Living a Meaningful and Fulfilling Life with Schizophrenia// Tues 31st May, 2022 7-8:30PM AEST

Hi there @A0ri021 😊

I found my treating team such as a psychiatrist, GP, case manager, psychologist, and nurses the people who I could first get to understand schizophrenia within a safe, and non-judgemental space.

My family is very supportive, which I’m lucky to have as part of my support team. Though they are not clinically trained so often said things the wrong way or don’t understand situations.

Peer groups were another safe and non-judgemental space to talk to others who had had similar experiences with mental health and other life challenges. Being peer-led with clinicians sharing the facilitation created an informative and nurturing space to develop and learn to re-engage in life.

Facebook groups are an open format for sharing and witnessing other people’s experiences but without the clinical boundaries that peer groups have. There was a lot of unsafe sharing and negative thought processes which can become overbearing.

Following influential people on Facebook, Instagram, and Twitter was inspiring to see their growth and ability to recover while still experiencing the same issues of symptoms, stigma, and discrimination in the community.

Loved ones can be amazing with observations and helping to raise our awareness @A0ri021 ❤️

How do you find a peer group? I think this would be really helpful for my family member?

Yes, I've experienced that with people I meet and disclose my experiences. @A0ri021 though it can become a little overgeneralized so be aware of other people's interpretations of your experiences.

@LW1969 Great questions! We will let you know in a post that covers this soon in the discussion.

Next Question, is for everyone: How do you feel about public perceptions of people with schizophrenia, vs the reality? @RiverSeal

Having heard voices for about 25 years and being diagnosed in 2004 as Bipolar I and then two other times as Schizophrenic, hope was just taking things one day at a time. I thought everyone hated me after I was bullied in two jobs and began hearing voices more severely in 2002. I guess I just persevered. Now although I have only managed to do some volunteer work with horses, dogs and one young child, I am currently trying to find paid employment. I tried one shop which I really wanted to work in but the manager was so negative I didn’t accept it. I have just realised that one of my greatest difficulties with working is that I am constantly fatigued. I don’t know if it is my medication or not. I wake at 11am and if I wake earlier I am exhausted all day. Sometimes I will have a nap of even 3 hours in the afternoon and then be tired again at 7.00 pm. I am about to undertake a sleep study and try a CPAP machine for sleep apnea. So I am hopeful that will help.

I think hope is having a goal and believing in yourself. It helps to have an interest, no matter how simple. Now I like to do art and read. I still have trouble with anxiety and a huge lack of confidence with art even though I did well in some art classes. I am working on that. Sometimes I read, sometimes not. Sometimes it is difficult to concentrate. I worry about finding paid employment if I can’t manage to focus, concentrate or remember things. I remember little of my life really and only some of the negative things at times.

I think hope is just hanging on and trying. One step at a time. Don’t put too much pressure on yourself. Don’t set yourself up to fail. Be inspired by other people who cope with mental illness. I read about those people and books about mental illness. Knowledge helps. I even toy with the idea of writing, even if it is just for my family and friends, to help them to understand mental illness. I find meditation and relaxation helps.

In 2002, I thought my life was over. I have improved over the years. My current psychiatrist who mainly treats people with schizophrenia, says he has observed that people often improve with age. This is true for me. My hallucinations were very difficult to deal with for many years. But now I find it easier.

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?