Η εµπειρία της ψυχικής νόσου, μέσα από ένα blog

Πριν διακόψουμε τη ροή των αναρτήσεων για λίγες εβδομάδες, λόγω καλοκαιρινών διακοπών, θα σας προτείνω να επισκεφθείτε ένα blog που ανακάλυψα, τυχαία, πριν από λίγες μέρες: το science of insanity. Το συγκεκριμένο blog ξεκίνησε, πριν από τρία χρόνια, όταν μια 36χρονη γυναίκα αποφάσισε να καταγράψει τις σκέψεις της, μετά από ένα ψυχωσικό (ή ψυχωτικό, αν το προτιμάτε) επεισόδιο.

Όπως γράφει και η ίδια, το blog ξεκίνησε ως μια προσπάθεια να κατανοήσει τη (νέα) θέση της στον κόσμο και πως θα συνεχίσει να ζει με μια διάγνωση ψυχιατρικής διαταραχής. Γι΄ αυτό το λόγο, στις αναρτήσεις της, δεν περιγράφει μόνο πως βιώνει τα συμπτώματα της νόσου, αλλά και πως άλλαξε τις σχέσεις της και τη ζωή της η εμπειρία αυτή. Τα κείμενά της είναι γραμμένα με απλότητα και αμεσότητα και πιστεύω ότι έχουν ενδιαφέρον τόσο για ανθρώπους με παρόμοιες εμπειρίες και επαγγελματίες ψυχικής υγείας, όσο και για όσους θέλουν να γνωρίσουν, έστω μέσα από ένα blog, τις αλλαγές που επιφέρει η ψυχική νόσος στη ζωή ενός ανθρώπου. Και, επειδή πάντα υπάρχει ο κίνδυνος της γενίκευσης, ας μην ξεχάσουμε, διαβάζοντας τις αναρτήσεις, ότι κάθε άνθρωπος βιώνει με το δικό του (μοναδικό) τρόπο αυτά που του συμβαίνουν.

Στη συνέχεια, παρατίθενται κάποια αποσπάσματα από αναρτήσεις του science of insanity, τα οποία ελπίζω να αποτελέσουν το ερέθισμα για να διαβάσετε περισσότερα.

“...what I have not found is how to live with the sickness, on a day to day basis, how to incorporate my experience with that of what I read about in scientific and popular papers and books. They don’t seem anything like me; yet we share a single, shocking, fact in common: the diagnosis. Much of my mental space these days is spent with trying to come to terms with the sickness: pre-diagnosis I was a high-achieving researcher. I knew who were the people I would be comparing myself with. Post-diagnosis, I have a new cohort to compare myself with: mental health patients. Somehow, I don’t fit with either of these groups. This weblog is going to be an attempt to understand my (new) place in the world: how to live with a diagnosis of schizoaffective disorder.” Introduction - why why why

“...I was aware of myself, but aware that I wasn’t in myself – I was beside myself – out of my head. English is full of terms that describe this feeling. In the locked ward, I spent most of the time crying. My memory gradually comes back from this point. The rest of the time in the locked ward I spent working out how to escape. In fact it was quite easy to escape. It was summer, and the patients were allowed into the garden, which is surrounded by a high wire fence. I got a fellow patient to distract the nurses, and climbed over the fence and ran as fast as I could. Where was I going? I had no plan. I ran into the forest, and finally stopped at a park bench. A homeless man came and started talking to me. He seemed to know me. I panicked and started to run, this time back to the ward. No point going home, my husband would just phone the hospital. So I waited until the nurses weren’t looking and climbed back in again. I got a standing ovation from the patients. The nurses never knew...” What is it like to be in a dissociative state?

“...Talked with my psychiatrist today. I was really upset over the idea that the nurses, and my husband, are saying I had been hearing voices. As far as I am concerned, I didn't hear voices at all, what I heard was people talking, a very different matter. The psychiatrist's reply was, you heard third person external auditory hallucinations. So, by definition you heard voices. I find that super upsetting. He said, what is the difference, why does it matter? I said, voices are disembodied. Hearing people talk is completely different, not abnormal at all. But of course, those people (which people exactly?) were saying bad stuff about me. It's all hallucinations. But I thought that was a sign that while I never had voices before, now I had, which must mean that I'm getting worse, not better. But he said, it's not worse, it's just different...” Ward diary March 2009

“...I’d like to try and explain what it is like to actually have a sickness like this, but I find it hard to know where to begin. Maybe I can start with asking how different would my life be if I didn’t have schizoaffective disorder.

Well, I wouldn’t take medicine every day. I wouldn’t have the side-effects of the medicine – mostly just sedation. So I would be able to get up at a normal time, and help my husband get our daughter dressed, fed and at school by 8.30am. I would be able to work full-time; again because I wouldn’t be sedated for most of the morning; and because I would be able to handle the normal stresses of daily life. I wouldn’t have to have psychiatric appointments every week; with my case manager, my psychologist and my psychiatrist, and the blood laboratory. I wouldn’t have to live regular hours. I wouldn’t have to worry that my daughter might suffer from me being ill; or that she might get the sickness herself later on. My husband would probably prefer it if I hadn’t gone psycho. My career wouldn’t be in tatters.

On the other hand, some good has come out of the sickness. During those long hospital stays I learnt to speak the language of my adopted country. That is a huge plus. Also, I have made friends while in hospital, and I think I can fairly say I have experienced things which not many people get the chance to experience. I have learnt a lot about what it is to be human. I have a nodding acquaintance with many of the homeless street people in the town I live in, which most people don’t have. I wish I could say I had these creative highs which people like Kay Redfield Jamison seem to have, but I seem to have missed out on that. Can’t win ‘em all...”  What is schizoaffective disorder?

“...if I'm having a psychotic attack, what should I (or anyone else) tell my daughter? She is 6 years old. I have had psychiatric problems since she was 2. She has grown up with my illness, so, in a way, she doesn't need to be told anything. On the other hand, I would rather we talked too much rather than too little about it. The worst case scenario in my mind would be that my illness could become a huge untouched unmentionable open secret within the family...” What do you tell your child about what's wrong with you?

“...What I really would like is my mum to be able to say the name of my illness, to be able to admit what has happened to me, to be able to say sorry for her share in all of this, and sorry for all this that was nothing to do with her. There is a lot to be sorry for. But until she is able to say out loud the name of my illness this is not going to happen...” Just say it

“...At a party last week, a friend of mine, a woman I have known for about 6 months, and become quite friendly with, asked me how I have been since she saw me last. I said, I have been in hospital for 2 weeks. She looked very surprised. I said, by way of explanation, I have schizophrenia. Her face said it all. Shock and dismay. She didn't say anything. Absolutely nothing. Her husband works at the same place as my husband, where I used to work, and where many of my friends work, plus she knows I have been in hospital before and have been on sick leave the whole time I have known her, so I assumed she must either already know or guess something of the sort. But no. She was truly shocked. Later during the party, I found myself next to her again, and I said I was sorry for having shocked her. (Why was I apologising?). She said no, she was sorry she had such a transparent face. That was all she said. Confused and hurt, I moved on.

So. What should I have said? If I hadn't said I had been in hospital, with schizophrenia, our friendship would never progress. We could never become close with this huge part of my life not to be spoken about. But when I told her, she was shocked and looked like she wanted no part of it. What should I do now?

The dilemma is this then: tell people, and risk this awful reaction, or not tell people, and never be able to share a huge important part of my life. I just don't know...”  What do you tell people about what's wrong with you?

"...Look what they've got on Facebook. It's a quiz, entitled "What mental disorder do you suffer from?"

The friend who did the quiz got the result Schizophrenia: “Schizophrenia is a serious illness marked by psychotic phases of hallucinations and gross disorganization of thoughts. You're not just a disorder - you're a DISEASE! Your peers fear and hate you, and they also think you're a freak. You're severely ill and should go check yourself into the nearest mental hospital as soon as possible.”

I don't even know where to begin with how awful this is. I am completely revolted. Is that what people really think about schizophrenia? Really?" What do you think of this?


Φωτογραφία: Marsh (1901) by Imogen Cunningham