blog image

Thu 14 July 2022

From Patient to Advocate

From Patient to Advocate.

We hear a lot about the stigma around mental illness. What I’ve found interesting through my journey is most of the insults I have experienced with my mental illness came from inside my own head, not from anyone outside. I’ve never begrudged anyone else for their life experiences or for them not being well, quite the opposite. I’m amazingly empathetic, supportive and genuinely interested in people’s experiences. But me, I hold myself to a whole new standard. Stupid huh. I’m as unwell as anybody when I’m unwell.

I have schizophrenia, specifically schizoaffective disorder. I received my diagnosis after my parents called the police on me. The freaking police! I thought I was fine!! The best bit, after a 3 month stay in an inpatient unit, on discharge, the psychiatrist asked me if I felt better. I looked him dead in the eye and said, “You should probably ask someone else, I felt pretty damn good when I came in here”. The way everyone looked at me made me realise I still lacked insight into my own unwellness, and my own diagnosis, and the seriousness of it. Mum said, “you’ll be in and out of here forever if you don’t start engaging with this,  and I just can’t do that” Ironically the thought of coming back to this unit, and yes, EVERYONE has told me I’m in the minority, really didn’t concern me. What concerned me is what I had put my parents through and that is what I beat myself up about, for years, and it did me absolutely no favours in terms of getting well.

I saw the toll my illness took on my family. They aged. They didn’t discuss my illness or what they’d had been put through from my ‘stay’. I’m fairly sure they would have openly discussed and relied upon their mates if I’d been diagnosed with cancer. Mental illness really is still a different ball game. I actually got concerned about my parent’s mental health because of my mental illness. They were all at sea and struggling even more, because I was being flippant with my own health status. Berating myself for my mental illness is like berating yourself for a physical illness….you just shouldn’t do it. It just is right. There are no right and wrongs, there just is. And the ‘is’ was that I was acutely unwell, and acutely unaware. So, I got serious, really serious. Shame drove me. Not shame for my diagnosis, shame for what I’d done to my parents, when they had done absolutely everything for me my whole life, I felt total shame that I had let them down and caused them stress. I hated myself for it, but this hate didn’t help me get better, it helped me get worse.

I’d love to say, I’ve turned the corner, but if I’m honest I still lose sleep over the impact my illness has had on parents. However, I don’t reject my diagnosis or my past….probably nothing that I had anticipated featuring in my future, but here we are.

For me, medication, a psychologist that I trust and genuinely enjoy engaging with and a good support system has helped me to move on, but I will never forget what those first years in my treatment plan were like and I’ll never forget what those first few years did to my parents and close friends.

Time helps massively and as time has gone on, I’ve realised that I don’t actually identify as a patient anymore. I identify as an advocate. What’s super brilliant is my parents have also evolved. They are finally proud of who I have become. Not for how I’ve changed, but for the fact that I finally took it seriously and put in the work, and in doing so, I turned my life around, and theirs too.

I talk a lot. I talk about my mental illness, I talk about people I’ve met, and their stories, I talk about medications and what works and what hasn’t worked for me and for others, I just want people to be well, and well now. Not later. People often ask if I get sick of telling my story, and there was a time I got a bit worn down by it. But I’ve changed my perceptions and now I see me sharing my story as a calling, a passion and an essential part of me being me. I know it’s kind of self indulgent, but I’ve helped hundreds of people on their journey, I’ve helped hunderds of people on how to help people better on their journey, and that is so freaking cool. I don’t want my knowledge, diagnosis and coping mechanisms to go to waste. I want to help. It’s actually given me a purpose and its helped me make sense of why I was given this horrible mental illness. It’d be the same with a physical illness right – no one wants it, but when we are given it, it’s kind of our duty to make the most of it.

What I’d like you to know, is that you are not alone. There are bucket loads of people going through the same or similar stuff as you. I wish I had heard that when I was really unwell, I needed to be loved, heard and validated. We all do.

Don’t get me wrong, I have a serious mental illness, I’m not always well! There are days when I do not feel even a little bit motivated, I even feel a lot depressed. Sometimes just sitting on my deck and taking deep breaths is all I can manage and that’s ok. Some days I go out and conquer the world. That’s ok too.

My diagnosis was indifferently (at the time) life altering but being diagnosed with schizoaffective disorder was not the end of my life. In some ways it was the start of it. Through it I've found purpose and meaning. Kind of cool to think about it like that.