Rethink is a mental health charity mainly based in the uk.
They were asking for information and being able to speak to people who have been diagnosed with schizophrenia, I thought I’d share my story, with all the good and bad.
I remember I had been sectioned under the mental health act. I was 21, and this wasn’t the first time or the last time I was sectioned. I’ve lost count of which admission it was.
I was sat on my inpatient bed after a ward round. I was so confused about what had been said. A nurse doing the 15 minute checks on me could see I was distressed. I thought I had spiders crawling over me, I was trying to shake them off, then the nurse came and asked if I was okay and what was I distressed about.
She was trying to calm me down by saying there were no spiders, and I was seeing them because I have schizophrenia. Honestly, I really wasn’t sure what was real or not. She could have made it up but it turns out it was the spiders that weren’t real. The nurse asked if I wanted any information on it, I said yes and asked when was I diagnosed?
She said don’t you remember, you were just told in your ward round. I honestly couldn’t remember.
The nurse brought in some information and sat on my bed trying to explain it, I can’t remember any of it. I was so disconnected that I didn’t have a clue what was going on. Looking back on it now I must have been really scared.
Since that day the label of schizophrenia has been pulling me in every direction possible.
There are good and bad days. I speak to God which I see as positive, I feel special and I feel it’s an extra layer of protection from the experiences of being spied on (which I have been told is a delusion and that no one is spying on me, but I don’t believe them).
Some of the other spymptoms I experience due to this illness can be really scary, This makes me feel that I no longer want to live. I won’t go through them one by one as there’s loads of information from charities and the NHS about schizophrenia.
Writing this is taking a lot of concentration and confusion, in trying to work out what’s me and what’s the illness. I’m confused about what are symptoms and what is real life. I’ve had to ask for help from family to help me explain what goes on and what’s symptoms of the illness.
Is it like some physical illnesses where treatment can make you better or worse? This is the question I ask. But recently I was told to prepare to be on medication the rest of my life. I feel this is a major setback but I’m trying to get used to it.
It all started before the age of 21 when I was diagnosed. My symptoms have been going on for years. I’m currently 24 and still getting to grips with medication, and struggling with how to deal with every day situations. However, I have learnt that medication plays a big role in recovery for me. It helps dampen down the psychosis, which means I’m able to tell more what’s real and what’s not. It has taken me many years to figure out what medication to take, it’s been a lot of trial and error. I’ve tried alot of them. Some had really bad side effects, some were okay but didn’t help me enough. I’m currently on quetiapine XR, which is the slow release one. It only has a few side effects and works well for me, although I am on 1000mg which is above the recommended amount. The main side effect which affected me was weight gain. I put on 5 stone, this may also have been because I wasn’t getting enough relief from the medication so I started drinking alcohol to help me deal with it. It worked short term but contributed to me putting on loads of weight. I’ve managed to loose almost all the weight I gained.
Even now four years later my medication is starting to have less effect but I know that if I stop it I will get all the symptoms back. I hear voices, see things that aren’t real. Basically the life that I’m living I’m not sure what’s real and not, like a nightmare which you can’t wake up from or always being on high alert, with fight or flight working. It’s so scary, you think what you’re thinking, seeing and hearing is real, and you lose time. I sometimes can’t remember days or weeks at a time. You don’t question it not being real, there’s no explanation to show you that what you’re experiencing isn’t real. It’s terrifying. It’s a living nightmare, and the worse bit is I know the medication helps me live a more normal life yet I still stop taking it, from listening to the voices or my thoughts thinking it’s not what I’m told it is.
My family and friends really haven’t been that supportive. I think they just couldn’t get to grips with the whole concept of being mentally unwell and how it affected me. This lead to me not being included in a lot of things. And also I started to isolate myself more and more. I’m currently trying to build my relationship back up with my family. Throughout all of this my cousin has been my carer and helped me at times when I’ve pushed my family away and was very unwell.
They don’t know how to act or how to talk to me. I feel pushed out of the family, and events. But I’m working on that.
Although being diagnosed was horrible it’s not the end of the world. I’m getting better at knowing what I need to do and how to accept the help from my local mental health team and family.
I’m looking forward to the future, where I aim to hold down my dream job of helping others with special educational needs and mental health difficulties.
I can see a future now it’s all getting better and under control.
Image shown is from the rethink website.