This blog was originally posted at Lightswitch Foundation
When I was 19 I was diagnosed with schizophrenia.
This didn't come as a shock or anything. I had been progressively moving up the diagnosis spectrum since my mid teens. It started with depression, then moved to bipolar, then borderline personality disorder, then atypical psychosis and then finally schizophrenia.
The diagnosis didn't really change much for me. I was still dealing with the same hallucinations that I was before there was a word for it. All it really changed was the medication I was now given.
And how people treated me.
Schizophrenia is a scary word. This isn't helped by how TV and movies portray it as the 'go to' illness for any psycho killer. They also manage to confuse it with Disassociative Identity Disorder (DID) - or multiple personality disorder - all the time so many people think that people with schizophrenia are actually going to change personality and start killing them at any moment.
This isn't true. People who suffer from schizophrenia see and hear things that others can't. Often these things are not very nice and this can make the sufferers get angry and confused as they percieve themselves as under attack. But the same would happen if you were actually being yelled at or harrassed by a real person. The reaction isn't wrong, it is just caused by something that is hard to understand.
By and large people with schizophrenia are pretty peaceful. Most of their rage and confusion gets turned inward into self harming behaviour, rather than outward to hurting other people. With all the people I have meet with this illness, I have only seen a couple of instances where the person was freaking out beyond control.
Most of the time they simply want to talk about what is happening to them.
And most of the time they have no one to talk to.
The worst thing about this illness is the loneliness. People think it would be the voices or the hallucinations, but it isn't. It is the pain of having no one to talk to who understands, or wants to understand. Because they don't understand it, they fear it, and so all of us are lonely.
People with schizophrenia know that they are 'crazy'. They are very aware of the fact. They have moments of lucidity where they know exactly what is going on around them and they know that they have had an episode and it is usually something they are very afraid of, ashamed of, and wish didn't happen. The drugs they are given to help with the psychosis often leave them unable to feel anything, which is worse than seeing something that isn't real. It is why a lot of them come of their meds at one point or another. They just want to be out of the drug fog.
But even when they are lucid, they are lonely. Often their friends and family have no idea how to deal with what is happening to them so they avoid them. People in psych wards very rarely get visitors. People at home will be left their by themselves with only community nurses to check on them. No one wants to hear about their day when it may be filled with things that didn't really happen.
They did happen though. To the person who is hallucinating, those images are as real as real life is to you. And when they talk to you about them they aren't making things up, they are telling you about what really happened to them. You don't need to tell them they are wrong or it didn't happen.
So these are my top 5 points of dealing with people you may know with psychosis:
1. Still be their friend. Go around for coffee. Talk to them about their day, even if it is filled with stuff you don't understand. Love them.
2. Listen to what they are saying. It may sound nuts to you, but they are trying to communicate something with you. Are they telling you about someone who doesn't exist who is scaring them? Reassure them and tell them you are there to protect them. Find a way to relate to them in the world they are in.
3. Don't try and tell them that what they are saying isn't real. It may be upsetting to hear your loved one talk about something not real, but it doesn't help them to tell them that. They have their own problems going on, and telling them those problems don't exist doesn't help them, it only makes them confused and upset.
4. When they are having a good day, let it be that. When someone is lucid, you don't need to bring up all the times they weren't. Unless they do, and then you can talk about it. But otherwise it is just upsetting to them to be reminded that they have problems. Let their good days just be good days, where you can relate to them normally.
5. Be their friend. I am repeating this one because it is so important. If you were their friend before the illness, you can be their friend during. It might be upsetting to you, but them being lonely is worse. Visit them in hospital like you would for someone who had a bad accident. Visit them at home like you would before the illness. Cry about it in the car ride or by yourself, because it is hard on everyone, but don't let them become another lonely person with no one to talk to. Make the time. Change lives.
This blog was originally posted over at Lightswitch Foundation.
When I was five I was sexually assaulted at my school by an 8 year old boy. I was scared and I was confused as to what had happened to me. My parents believed at the time that if I didn't talk about it, it must not be bothering me. They didn't understand about the guilt that keeps victims silent. They didn't realise I internalised what I had gone through.
This meant that when I was 8 and had sexual advancements made on me by an older man, I was unprepared to talk about it. I again felt guilt and shame and squashed it right down inside me. I didn't talk about it but that didn't mean I wasn't feeling it.
So when I was raped at 16 I had years of learning to keep quiet to draw on. The guilt and shame were overwhelming. I became depressed, struggled with a long period of psychosis, self harm and eating disorders. I didn't talk about what happened to me for years to come and it is only recently that I began to share openly what had happened to me.
Unfortunately, my story is not a isolated event in the lives of New Zealand women and girls. 1 in 4 of us will be sexually assaulted at some point in our lives before the age of 25, and one in 5 men will experience the same. We live in the shadows, refusing to show our pain, refusing to talk about what happened to us for fear of slut shaming, not being believed, or simply opening old wounds.
We are hurting. Surrounded by people in a society plagued by sexual abuse and yet still isolated and alone. We turn the guilt and hate on ourselves and in doing so we not only continue to harm ourselves, we deny our stories to the next generation to help them understand, grow, protect and heal.
I started Lightswitch Foundation because I believe that it is time we talked.
We need to talk about the reality of what is happening to us, in this and many other topics. We need to stop pretending we are OK and realise that there is a massive amount of us who are feeling lost and alone. We need to stop hiding from the difficult and ugly subjects and bringing into the light all of the things that have been lost to darkness.
We cannot take back what was done to us. We cannot reclaim our innocence. But together, we can turn on that light, flick that switch and start a conversation that may start us on the road to healing, as individuals and as a nation.
We would love to hear stories from people who have struggled in darkness with any topic. If you are still there, struggling, or if you have come out the other side. If you know someone who has walked dark paths, or if you have seen the affect that it has had in your community.
Please message us with your stories of struggle, of pain, or of hope. Together we can turn the light on these subjects and start our way toward wholeness.
I think it's time we talked.
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