My name is “Katherine” and I have suffered from schizophrenia for over 25 years. Sometimes I can’t believe I have had this condition for as long as I have.
It started when I was 25 and has almost become a part of me. The first few years I was at University and suffered with it alone; the first time I had a Psychotic Breakdown was when I was living as a student in Mexico.
The “startling phase”, as author Marius Romme puts it, is a very scary time when you don’t know what is happening to you. I knew I was “going mad” but couldn’t articulate what was happening to me, I half knew the voices weren’t real – but they seemed very real to me.
They never told me to do anything, but commented on me – something they still do sometimes, saying negative and abusive things about me. It is like all the negative things anyone ever said about me were stored in my subconscious, ready to pounce on me unawares.
A New Chapter
Up until last year I was working part time as an admin officer for a supported housing unit, and before that I worked for a mental health trust in the NHS. I found working very stressful – not so much because of the actual work, which I found quite therapeutic; but because the symptoms I suffered from, the paranoia and voices and anxiety, made it difficult at times.
I was dismissed from work in January because I had been off sick most of last year. Although my Salford employer were good, I was unable to carry on working because of my symptoms.
Dealing with the symptoms was made more difficult because of the lack of continuity of care I had when I moved to a different area – I got no help from the mental health team there. They referred me to my GP for care, and it wasn’t until I moved house back to Salford that my treatment improved. I saw a psychiatrist who increased my medication to help decrease the symptoms, and I now have a CPN too; it helps to talk to her about my issues once a month.
I now volunteer once a week , which is good for me – I get social interaction, and also do some work, which is good for the soul. I would like to be able to work again on a part-time basis when I eventually get a bit more control over my symptoms, although with something like Schizophrenia these are difficult to eradicate totally even with medication.
I am going to go to Mind in Salford’s Mindfulness course soon, which I hope will help with my anxiety. Problems with my neighbours make my anxiety and stress levels much worse, and cause lack of sleep – and these make my other symptoms worse.
I will also be undergoing a short course of CAT (cognitive analytical therapy) in Trafford, which I hope will help me control some of my symptoms.
I do a lot of reading and recommend “Accepting Voices” by Marius Romme, which explains all about voices and helps you to come to terms with them. There are many publications written by the Hearing Voices Network (who I used to volunteer for) and they are very helpful as well. Another good book I found was by a group of psychologists called: “Think You’re Crazy, Think Again”.
Living with Schizophrenia – and Stigma
Living with psychosis can be a full time job, especially if you don’t take medication, which I didn’t for the first few years. I didn’t see a psychiatrist until 1993, and it started in 1989. I did see student counsellors, but they weren’t much help, and didn’t realise I was as ill as I was – in fact I think they needed better training.
When I was at uni I was all at sea, I became more and more isolated, and the friends I did have didn’t understand, and weren’t very caring or compassionate. It was quite a lonely place.
I had psychotherapy at the Red House (1994-1996), where I met my husband and learned to understand myself and my parents better. I met a few good friends there as well, people that really understood me, and were on my wave length. They didn’t have schizophrenia, they had other mental health issues, but they could understand. I still have one good friend from the Red House today.
It is very difficult making friends with this condition. You are afraid of revealing too much information. To say you have Schizophrenia is to reveal yourself and to be judged by something so stigmatising; it is one of the last taboos. People make assumptions about you, are scared by you, dismiss you because they think you are the illness.
It doesn’t help that all the media broadcasts negative things about Schizophrenia, axe murderers, machete be-headers – in the same way that Jihadists are written about. There are rarely positive things written about people with the condition. They don’t say that people with Schizophrenia can be kind, can have their own house and job, and have loving relationships just like anyone else.
Life with Schizophrenia can be challenging, difficult and sometimes a nightmare – but there can be good times, times when you can enjoy the simple things in life, like a day out at the beach or a laugh between friends or partners, stroking a purring cat or even something mundane like a nice cup of tea and a biscuit.
This blog has courageously been written by one of our service users; “Katherine” wishes to remain anonymous to avoid facing more stigma in the future.
If you connect with anything within this blog, and would like more information or help, the Hearing Voices Network can be contacted via their website www.hearing-voices.org.
If you wish to find out more about our Mindfulness courses, visit our Mindfulness section; a referral form can be found there too.