Lived Experience Forum

[RiverSeal]

Connecting with your treating team and understanding your symptoms is a good way to prepare for the possibility of your psychotic symptoms returning. @Patchworks 

[TideisTurning]

Hi there @A0ri021 😊

[RiverSeal]

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.  

[A0ri021]

I have found that certain family members and my partner also help with helping to identify symptoms when you yourself are unaware.

[TideisTurning]

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

[LW1969]

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

[RiverSeal]

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. 

[RiverSeal]

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

[TideisTurning]

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

[Elisena]

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.