Schizophrenia impacts the friends and family of those living with it too. In this special blog Kate discusses her life with her brother who was diagnosed in his teens.
My brother Michael, who is in his late thirties, was diagnosed with schizophrenia when he was a teenager. We have been living with that diagnosis for nearly twenty years. After an initial period of relative stability, where he was well enough to go to university and live independently, for the last 9 years he has been less able to manage his symptoms and has consequently been in and out of hospital.
In my view, there have been a number of failings in the care and treatment Michael has received. He has been discharged without appropriate support in the community, fuelling the cycle of inpatient care. At times it feels like he has been tossed aside by society because it’s too difficult to care for him. The care he does receive can feel overly medicalised and de-personalised. Michael is not treated as a whole person, with dreams, aspirations and talents. He is treated like a collection of symptoms, or a problem that needs to be solved.
I get little sense that my brother is involved in his own care, which often means he disengages from the process of treatment, and in turn that diminishes his chances of being able to live a happy and independent life. Put simply, Michael's care and treatment often serve to institutionalise him rather than help him re-build his life.
As well as this struggle to see him access timely and appropriate care, his sometimes very challenging behaviour can also mean it is very hard to be his sister too.
It impacts on me personally. I am often on edge, worrying about what has happened to him, or thinking the worst has happened if I receive a call from a family member. The role of siblings can be overlooked, but the impact on different areas of our lives can be huge.
It can be quite challenging to stay resilient to continue to support my brother in the face of his anger and accusations, which I know are often the result of the paranoia he is experiencing or his own feelings of frustration and powerlessness to change his situation – but I am doing my best to be there for him and help him to try and navigate the complexity of the systems that are supposed to meet his needs. I have attended a Rethink Mental Illness siblings support group and used the website for information and advice.
What can be really tough is dealing with the stigma and people’s misconceptions of schizophrenia. Inaccurate and irresponsible media portrayals seem only to fuel the fear and confusion about the illness. People simply do not know what schizophrenia is. They think people with schizophrenia are dangerous and should be feared rather than supported and cared for like anyone else with a health problem. There is such a disparity between society’s reactions to and perceptions of mental and physical illness. Some long-term physical health conditions can often evoke a response of sympathy and compassion, whereas the disclosure of a mental illness can still all too frequently be met with an awkward silence – or worse.
When I was a young child, my parents hid Michael's illness precisely because they wanted to protect him and us from the impact that stigma can have. When they eventually opened up about his illness, they were overwhelmed with the number of people who had a friend or relative affected by schizophrenia – and this was a great source of reassurance for them. It’s incredibly sad that stigma silences people, when in fact by sharing our experiences we can all help each other.
Help us make a difference, share this with your friends.
Read more about life with schizophrenia.