Brushing your teeth can seem more difficult than climbing Everest

Paranoia and hearing voices are two of the common symptoms experienced by people living with schizophrenia - a mental illness that affects one in 100 people. In this special blog for Rethink Schizophrenia, Tom writes about how his symptoms can affect his daily life and how he is learning to manage his condition. 

I would love for someone to understand what the feeling of a long period of nonstop delusional thoughts feels like. What it feels like to be caught up in what are just stories you’ve made up in your head, to believe them like they are real. I have no idea when I’m having a delusional thought. In fact, I believe it’s just life. An example of this is when I had a period of about 6 months where I believed my postman was stealing all of my mail because he wasn’t delivering anything. I was expecting mail the whole time, but it just wasn’t arriving. I believed down to my core that the postman was withholding my mail and I didn’t know why.

Paranoia is probably the most constant part of my illness that means it restricts how I get on with life. I’ve had periods in my life when I believed I was being spied on by my family and neighbours, delusions of grandeur where I believed I was a superhero in hiding, and delusions where I believed all my food was being poisoned. The one thing that’s the same about all these delusions is that the bad thoughts fade, you start to doubt them, and eventually you realise they aren’t true. It doesn’t mean they won’t come back, because for me sometimes they have come back, but they’ve all eventually left me.

I get hallucinations nearly every day. These hallucinations can come in different forms. I mainly have visual and auditory hallucinations, but I sometimes get physical hallucinations such as the feeling of bugs crawling underneath my skin or smelling strong aromas that quite obviously aren’t around. Mostly hallucinations are mildly frustrating, where the seeing something quite random like the house on fire or having to keep checking the front door because it sounds like people are having a conversation just outside it. I can usually ask someone nearby if the house is on fire, or just try and drown out the sound of people nattering away outside. But when the hallucinations target me the hallucinations become frightening, hard to shake off, and can consume my mind. The hallucinations target specific thoughts that I have. I hear the words “do it” time after time, whispered in my ear, shouted from far away, all around me. These auditory hallucinations are accompanied by ‘Frank’, a hallucination I wouldn’t want anyone to experience. When I see Frank, I usually feel like my soul has been sucked out, and complete darkness has broken into my mind. The overwhelming feeling of dread, feeling like there is no way of escape from what can only be described as torture, inflicted by my schizophrenic mind.

Sometimes schizophrenia can be a lack of motivation and struggling with emotions. I believe these are negative symptoms of schizophrenia (hallucinations and delusions being positive symptoms). Half of the issues I have with schizophrenia are these negative symptoms that make me withdraw from life.

"I often don’t feel good enough to do something, I lose any excitement in activities I’d usually find entertaining. I hit lows where I feel like I can’t escape from emotional pain and being held back from even looking after yourself." 

Brushing your teeth or having a shower can seem more difficult than climbing Everest. 

I have been through extended times where I really haven’t looked after myself, where I haven’t washed my clothes, or bathed because it just seems either pointless too difficult. These times often last longer than any hallucination, and they often occur before any psychosis starts. Sometimes they can be a warning that I’ll experience some psychotic episode soon after the start of these negative symptoms.

Even though I have all of these symptoms and daily issues, I’ve still learned to live a fairly independent life. Sure, my schizophrenia gets in the way, but I work around the issues. I allow myself time to do my shopping. I’m not hard on myself when I can’t get something completed. I tell myself that tomorrow I will have a shower instead of today and that it doesn’t matter if I smell for one day. I see things that aren’t there but i now ask questions as to whether it’s real, either to myself and just casting a little doubt in my mind or asking someone I’m with. I’m a lot more vocal about my illness, and this has given me a lot more freedom, especially around my support group because I can talk about the more obscure parts of my illness and not worry about being judged and instead I get the help I need. Yes, Schizophrenia is debilitating, but it doesn’t define me.