Friday, 23 August 2013

The Real Dangers of Self-Stigmatization - An Explanation

My Huffington Post piece was published today, and it can be seen here. However, after watching Eleanor Longden's TED Talk again, (it can be watched here) I want to explain a few parts of my post, and also write about how her TED Talk made me understand a bit more about my voices.

Eleanor says her first voice was quite benign. It 'just' commentated on what she was doing and she could cope with it. However, after telling a friend and seeing a psychiatrist, she started hearing more voices and suffered with other delusions. She was diagnosed with schizophrenia, hospitalised several times and had to take medication. However, she describes her voices as a 'meaningful response to traumatic life events' rather than an illness per se. It's something that I have believed about myself since I first started recovering from my voices, and watching this video for the second time has actually made me understand something about two of my voices.

I heard a total of three voices, or rather, one voice, a group of two voices and a group of dozens of voices. My dominant voice was the devil voice, who was horrible to me. It was the first voice I would hear, and ultimately was the one that destroyed me the most. The other two voices, or groups of voices, I heard later. The first one was a group I called 'the whisperers'. They were two female voices who would whisper about me. I could never really hear what they were saying, other than my name and the word "she" or a variant of either (such as "she's"). The second was a group I called 'the talkers'. This was like a group of people talking but none of the actual words could be made out. An audio clip in this YouTube video I made is almost identical to what I heard (listen from around 1:19 for this clip). After a while, I started hearing male voices cheering and laughing, like you would maybe hear at a pub or football match.

Those two voices arrived around the same time during my second hospital stay and they lasted for about a year. They only ever started speaking during the late evenings and through the night though. When they started, they would be there until I fell asleep. Once I woke up, even if it was just a few hours later, they were usually gone. I can remember quite clearly the first night I didn't hear them at all.

It was the 24th of December 2010. I had been in hospital for 15 months at this point, and this Christmas Eve night was the first time I had slept in my own bed in all this time. I was waiting for the whisperers and talkers to start, but they didn't. I remember lying in bed, looking up at my bedroom ceiling for the first time in a long time, and wondering where on earth they were. I wasn't complaining about it; I was just wondering why on earth my head 'only' had one voice talking. The same thing happened the next night at home, and the next night too. The fourth night in a row without the whisperers and talkers was back in hospital, but I started feeling that these two voices had gone, and was relieved. I had an inkling as to why these two voices had stopped, but Eleanor's TED Talk has confirmed it in my head for me.

The two voices started while I was in hospital, around a month after I was sectioned. Not long after being sectioned, the self-stigmatization that I wrote about in my Huff Post piece decided to worsen, and I feared going home. I would manage to go home during the daytime, but at around 7 pm, I would start feeling anxious, and was often relieved to be going back to the ward for the 8 pm 'curfew'. Sometimes, the whisperers and talkers would start while I was at home, sometimes whenever I was travelling back to hospital, and sometimes while I was back in hospital. As someone who has always found the nights to be more stressful and has found that my spider phobia worsens at night, it now doesn't surprise me that these two voices were nocturnal. It also doesn't surprise me that the first night I didn't hear them was the first night back home since they began.

I believe that these two voices were like a blurry manifestation of my fear of going home. They worsened over time until they suddenly stopped that Christmas Eve night. At the time, I believed that the whisperers were two nurses talking about me. Maybe that's what my brain programmed them to sound like because I believed the nurses and the doctors 'knew' I was evil. This was the self-stigmatization of believing myself to be evil, because of my diagnosis and feeling like the staff were calling me evil through the word 'schizophrenia', in action.

As for the talkers, I often likened them to a crowded restaurant, pub or football match. I believe these were a manifestation of my fear of social situations. I was always stressed being out in public, because I believed that my diagnosis was visible. I felt like everyone around me knew that I was an 'evil schizophrenic' and were all judging me. My beliefs that I was evil led me to think that I would harm my family or others, and my fears were always worse at night. So my brain making me hear 'nurses' talking about me and hearing social situations at stressful moments were manifestations of my fear of going home. When I did go home overnight for the first time, my fears didn't come true, which made my fear lessen considerably, and the voices stopped. I really hope that made sense, because it makes sense in my head but I can't word it properly!

I've known that my dominant voice was a manifestation of the bullying for quite a while. After all, if it wasn't it would be one heck of a coincidence for my voice to threaten to harm my family in identical ways to how the bullies threatened to harm them! Some of the names the voice called me were also names the bullies called me. The most unique of these names was 'cradle-snatching lesbian' (long story) and as I have only ever heard that name from one group of girls and my dominant voice, then it would make sense that the voice was essentially the bullies!

Now for my Huff Post piece. I have various beliefs around my schizophrenia diagnosis, some that schizophrenia isn't a valid diagnosis and as such, I'm not schizophrenic. However, I don't go broadcasting that belief to my psychiatrist or CMHT in case they start thinking I lack insight again. I know I was ill, but this illness was caused by my past events. I know there are some who say we shouldn't even use the phrase mental illness, but I personally believe that what I experienced was an illness, and a mental illness at that. I don't like using the diagnosis of schizophrenia though. I believe that saying voices are a meaningful response to traumatic life events is pretty apt.

So with this in mind, there are a few bits from my piece that I want to explain.
That first hospital stay lasted eight weeks, but I was discharged without my symptoms improving. With my illness worsening in the community, I was sectioned a second time less than a year later. During this hospital stay, I finally started recovering from what the psychiatrists were now calling schizophrenia.
'My symptoms' and 'my illness' are meant to portray symptoms of my mental illness, not necessarily schizophrenia. That's why I write 'what the psychiatrists were now calling schizophrenia.' I didn't call it schizophrenia at the time, and while I describe myself as a 'schizophrenic' on my Twitter and blogs, I don't perceive myself as one. The label my psychiatrist gave me is schizophrenic, and it is a label given to many other people. I use this word on my Twitter and blogs so that others with the label can find me and hopefully find help. If I were to rename my blog 'my mental illness from past events' or similar, I don't think many people would find it. After all, whenever someone is given the label of schizophrenia and they want to find help online, what is the word they input into the search engine?!
Still Here magazine was born from a desire to help others with similar diagnoses.
Again, this is saying I want to help people with schizophrenic and psychotic diagnoses, not that the person is schizophrenic or psychotic. If a person is OK with being called schizophrenic or psychotic then I don't have a problem with it, but I know a lot of people hate their labels. The subtitle of Still Here, 'Schizophrenia, psychosis and other stories' is again, for others wanting to learn more about these diagnoses to be able to find it.
Still Here is written to show sufferers that their diagnosis is not the end of their life and that there is a light at the end of the dark tunnel of schizophrenia and psychosis. I also want to help the carers, who are leading sufferers through the dark tunnel, who are also struggling immensely. Lastly, I want the magazine to educate people who are interested to learn the truth about schizophrenia and psychosis as I feel this could really help in the fight against the awful stigma of mental illness.
A schizophrenic, psychotic or any other mental health diagnosis is definitely not the end of a person's life. However, once a label is attached, regardless of whether or not the person feels like their label is correct, their dark tunnel has a name. So my dark tunnel was called schizophrenia, even though I don't feel like that label is right for me. Learning the truth about schizophrenia and psychosis - there's shattering the myth of being violent, because regardless of whether or not a person believes their label, no one wants to be perceived as violent when they're not. Shattering the stigma against mental illness would hopefully start helping people with schizophrenic and psychotic diagnoses to talk openly about their struggles, and maybe one day, the labels won't matter to anyone. If someone wants to describe themselves as schizophrenic, no one would blink an eye. If someone with a schizophrenic diagnosis shunned their label, no one would care. That's the important bit.
Making a difference to the lives of people suffering with schizophrenia and psychosis is what matters to me now.
I must admit, this was a subtle dig at the labels of schizophrenia and psychosis. The most I suffered as a result of schizophrenia was the self-stigmatization! Being labelled as psychotic, and then schizophrenic really set me back. I know that there are many people who experienced the same. This is another reason why I describe myself as schizophrenic online, so that others can find me and see that their label doesn't mean that they're violent, dangerous or will be unwell forever. Like I said earlier, I use my label of schizophrenia publicly so that people struggling can find me and hopefully find help. Without using my label, they probably wouldn't find me.

One last thing. I have been spelling self-stigmatization with a z because my Huff Post piece is on the American site. We Brits spell it with an s instead of a z!!

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