What's it like to have schizophrenia?

I was asked this question in a Direct Message on Twitter a few days ago.  It's not very easy trying to explain it in 140 characters so I thought for their benefit I would write a blog post to describe it.  Although it was written for this person, it may be useful for anyone else who knows someone with schizophrenia as it may help them understand the sufferer better.

So where do I begin?  To quote the Sound of Music:

"Let's start at the very beginning.  A very good place to start!"

The first noticeable symptoms I got started at 18 although a psychologist I saw a year ago believes it may have started developing months beforehand, possibly starting at 17 or even 16.  He could well be right about it starting as young as 16 as the annoying thing about schizophrenia is that you don't always know that there's something wrong!  The first symptom I remember getting was the first voice.  This voice (who called himself the Devil) would always be the worst symptom I had and would always be the dominant of all three of the voices I eventually heard.  I have probably referred to him as the 'Dominant Voice' in previous posts and probably will refer to him as this in the future so this is what it means.

Another symptom I had from the schizophrenia was delusions.  The biggest and most distressing delusion I had was the belief that I had given birth to a little girl who was taken away from me shortly after I gave birth.  Despite the fact that I know she's not real, I can still struggle with the knowledge that I'll never see her again.  Even though I'm technically not a parent, there is a part of me that believes I am and it is this side of me that struggles with not having my daughter.

I occasionally got visual hallucinations too but these were thankfully rare.  I would see what I called 'Demons' which were figures in what looked like long black cloaks with no visible body.  They had the shape of a human but I could never see a face or limbs or anything remotely human about them.  Needless to say, when I saw these things and believed that they were really there, I would be terrified!  One time I saw one while I was at University.  It was standing by the entrance door into my flat and at the time I was alone.  Despite it being a 3 person flat, it was the summer holidays and there was no-one else living there at the time.  I ended up barricading myself in my room and didn't leave for a week.  I phoned in sick to work and only left my room when the food had long gone and I was absolutely starving!  I don't think you'll need me to say how grateful I was that my room had an en-suite bathroom!

These symptoms that I've described are what's known as positive symptoms.  How ANYONE can think that these things are positive is beyond me!  The other type of symptoms are known as negative symptoms and it is usually these that are 'ignored' by psychiatrists.  Positive symptoms are more likely to hospitalise a person so when these symptoms go into Remission, people with schizophrenia can be placed on the back burner (i.e. ignored) so to speak.

The negative symptoms are pretty much the same as the symptoms of depression and are the hardest to get rid of.  Despite them usually being present at the same time as the positive symptoms, they can sometimes be difficult to notice.  When you have a voice shouting all your insecurities at you and commanding you to kill your family and yourself it can be difficult to notice that you're depressed, unable to get out of bed and not sleeping or eating properly.

I am in the Remission stage with my positive symptoms but still struggle with the negative symptoms at times.  But by far, the hardest thing to deal with is the knowing that things I believed in for years aren't true.  I can't trust my memories anymore.  Things I believe that have happened in the past could well be more delusions and I wouldn't know it.  When I recall a memory and no-one else remembers it happening, I panic that I'm delusional again.  Even if the memory is 20 years old and a very vague one!

So there's my experiences with schizophrenia.  However, schizophrenia is a very broad diagnosis and I had several more symptoms that I've not gone in depth with here such as Intrusive Thoughts, feeling detached and avoiding acting on commands from the voice.  As schizophrenia is such a broad diagnosis, there will be people with the same diagnosis as me but have had completely different experiences.  I spent time in a Psychiatric Rehabilitation Unit and probably met about a dozen other schizophrenics in here.  None of us had had the exact same experiences although some of us had similar experiences to each other.  Yet we were all treated in exactly the same way!  This is because there are guidelines as to how to treat schizophrenics and despite our differing symptoms, we all get treated the same way.  Make of that what you will!