As many of you will know, I have a diagnosis of atypical schizophrenia. It is much less of a ‘friend’ to me than my Autism /Asperger’s diagnosis, which I rather like. I have referred to the mental illness as ‘my own best enemy’. Part of this is in relation to the scary and debilitating symptoms I can experience but a whole load of negativity comes from the treatment for the illness more than the illness itself. I have taken heavy duty medication since 1995 and I have almost no hope of not having to take it for the rest of my life. Some of the medications have had terrible side effects, like tardive dyskynesia (this is a movement disorder which made me flick out my tongue like a lizard, involuntarily. It is usually permanent but I was very fortunate that it was reversed. I can’t begin to imagine how this would have impacted on my confidencce at job interviews and on stage if it continued).
I have been a client of a large number of mental health outpatient services and hospital wards and it is these that I have found disempowering, dismissive and discriminatory on a large number of occasions. It is as if some staff in mental health clinical services see all their clients as one big set of stereotypes rather than individual human beings. And the stereotype seems to be based on a lowest common denominator of unemployed people on benefits living in unstable accommodation who don’t want to take their medication as prescribed. I – and many other people I know who use these services – do not conform to this stereotype. I work full-time, own my own home, manage my own life pretty well, including taking my medication.
An instance of this prejudice and negativity occurred last week. Given that I have a dubious past from many years ago, I am always required to provide extra evidence when applying for things like police checks. I had to get a check for one of my Autism world activities and the government body regulating the check asked me to provide evidence of medical treatment I am receiving, As soon as I saw this my heart fell, for a couple of the reception staff at the metal health clinic I attend are gatekeepers of the worst order. My doctor there is a complete angel and I knew that if the got the message that I needed a one pager from him outlining my excellent medication-taking skills and compliance with treatment regimes he would type one up there and then. But I also knew that getting the message to the doctor would be almost impossible. I called the clinic and was told to post the letter from the regulator to them… but I only had two weeks to provide a resonse and I was going to Tasmania and then Melbourne the week after. What ensued was a strained conversation with the reception staff member who treated me as if I had asked for the doctor’s personal phone number and bank details. There was no respect, no humanity in the woman’s manner. I was not seen as an equal or even a human. The result of all of this was that I was left quite stressed and angry. It is a week later and I still haven’t heard about the letter from the doctor. I gave in and paid to see my GP because she does respect me and her receptionists don’t think I am a lesser human. I’m not even going to start describing some of the invalidation and prejudice I have experienced in psychiatric hospitals.
What bothers me is not so much that certain staff of mental health services are rude and dismissive to me. I’m tough and can deal with a bit of rudeness. But what about others who are not so strong and confident? I remember when I applied for my public service job that my psychiatrist at the time told me I wouldn’t be able to do the work because of my illness. What would happen if someone actually believed that negativity and gave up on something they might have been great at, like a public service job?
It does amaze me that the most prejudice around my illness I have had has come from psychiatric nurses, psychiatrist, social workers and other health staff. This is not to say that all staff are difficult and rude – it is a small minority of them that are discriminatory and rude. I have also had some great support and care from mental health workers and count a number them amongst my friends. But it is very hard when you are trying to get some assistance for your illness and get met with these sorts of responses. It certainly adds to the challenges presented by the illness.
I have a bit of a mission in life which involves a number of things, including improving understanding amongst certain health workers around the rights and needs of people with a lived experience of mental illness. Occasionally I make a difference but it is a change which needs to happen.