I have my friend Karen to thank for this. I anguished all week about what to write about for my second HuffPost blog, having decided to try to publish one a week. I overthought it, to be honest - but what I wrote for the Huffington just seemed to be more important than what I write on this blog. I still think of this blog as private in a way, because although I get a steady number of hits - usually around two thousand a month - the Huff has a readership of seven and a half million in this country and one hundred million worldwide. That seemed like a lot of responsibility.
Anyway, I realised eventually that not all of those people are going to read what I write, and the ones that do won't have any emotional investment in it - nobody's going to think I am letting them down if what I write is not original or ground-breaking. So, Karen told me that anxiety is a good, current topic, and I knuckled down to writing some words about my experience of it, off the top of my head.
Here's the link to the post: http://www.huffingtonpost.co.uk/louise-gillett/coping-with-anxiety_b_5992304.html
Hopefully, I won't spend the next week wondering about my next topic. But if anyone wants to suggest anything, feel free to write it in the comment box here!
Thursday, 16 October 2014
Friday, 10 October 2014
World Mental Health Day - Living with Schizophrenia
I have to start this blog post with an apology. Today was supposed to be the publication date for my 'recovery book' - unfortunately I have not been able to get it finished in time. What happened was this - I gave the manuscript to a friend to proof-read and she told me that it needed totally re-writing. I had written it as a memoir and she thought a self-help book would be a better format.
Well, I was tempted to ignore my friend's advice, because I had worked really, really hard to get the book finished on time and I just wanted to get it out there. But I knew that she was right - the book was not as good as my first memoir. She said people would be disappointed as a result, and I really did not want that to happen.
Anyway, that was last week and I decided just to think about it all for a while. I also realised that I had become far too fixated on getting the book finished - my home was a tip and I was completely stressed out. So this week I have been cleaning and tidying the house, which has helped to ground me. I have also been catching up on some reading - I have whizzed through Julian Barnes' 'The Sense of an Ending' in the last couple of days...
So. Sorry, everyone (anyone) who was waiting for the book. It's still on the way. I have the cover sorted and everything. (Briony Hartley from Goldust Designs worked on this for me, by the way. I highly recommend her services). I just need a bit of distance before I decide how I am going to publish it.
Meanwhile, I had relaxed successfully. I was starting to like living at a slower pace. I had been spending more time with the children, and all was good. Then, yesterday afternoon, the Huffington Post asked me to blog for them. This was the most exciting thing I had heard since I was invited to talk at Newcastle University, almost two years ago. I could hardly believe it was true. They asked if I could get the first post ready for this morning, for World Mental Health Day. They had pointed to a particular blog post here that they liked and said they would be happy to use that, so I adapted it a bit and sent it over. I still could hardly believe that it would really be used in the Huffington Post...
But it was! It is! Here's the link: http://www.huffingtonpost.co.uk/news/impact/
It's not the best piece ever, but it's a start. And now, they say I can continue to blog for them for as long as I like, up to twice a week. So I will do that, and link to any blogs here.
It's odd that this happened just as I decided to stop pushing myself. Maybe it's better sometimes to wait to be asked. Although I suppose they asked me because they noticed me on Twitter and on this blog, so you have to be out there in the first place.
Anyway, I am going off to relax for a bit now. Sorry again about the late/missing book. I might try and put some extracts on here soon, just to give a flavour of where it's going and how. As soon as I work that out for myself!
Well, I was tempted to ignore my friend's advice, because I had worked really, really hard to get the book finished on time and I just wanted to get it out there. But I knew that she was right - the book was not as good as my first memoir. She said people would be disappointed as a result, and I really did not want that to happen.
Anyway, that was last week and I decided just to think about it all for a while. I also realised that I had become far too fixated on getting the book finished - my home was a tip and I was completely stressed out. So this week I have been cleaning and tidying the house, which has helped to ground me. I have also been catching up on some reading - I have whizzed through Julian Barnes' 'The Sense of an Ending' in the last couple of days...
So. Sorry, everyone (anyone) who was waiting for the book. It's still on the way. I have the cover sorted and everything. (Briony Hartley from Goldust Designs worked on this for me, by the way. I highly recommend her services). I just need a bit of distance before I decide how I am going to publish it.
Meanwhile, I had relaxed successfully. I was starting to like living at a slower pace. I had been spending more time with the children, and all was good. Then, yesterday afternoon, the Huffington Post asked me to blog for them. This was the most exciting thing I had heard since I was invited to talk at Newcastle University, almost two years ago. I could hardly believe it was true. They asked if I could get the first post ready for this morning, for World Mental Health Day. They had pointed to a particular blog post here that they liked and said they would be happy to use that, so I adapted it a bit and sent it over. I still could hardly believe that it would really be used in the Huffington Post...
But it was! It is! Here's the link: http://www.huffingtonpost.co.uk/news/impact/
It's not the best piece ever, but it's a start. And now, they say I can continue to blog for them for as long as I like, up to twice a week. So I will do that, and link to any blogs here.
It's odd that this happened just as I decided to stop pushing myself. Maybe it's better sometimes to wait to be asked. Although I suppose they asked me because they noticed me on Twitter and on this blog, so you have to be out there in the first place.
Anyway, I am going off to relax for a bit now. Sorry again about the late/missing book. I might try and put some extracts on here soon, just to give a flavour of where it's going and how. As soon as I work that out for myself!
Monday, 15 September 2014
It's ALL about Self-Esteem
Bear with me - as the title suggests, the point of this post is to emphasise the importance of good self-esteem. But first I am going to tell you about a little family break we just took to Legoland.
Now, I probably should not be posting about this, because above all else I am a responsible parent and I never do anything to give the opposite impression. Ever since my eldest was taken from me as a baby, the last time I was sectioned (and the last time I ever will be!) I have been slightly paranoid about anyone ever accusing me of being a bad parent and removing my kids. It's not going to happen - the girls are at secondary school now, model students and brilliant all-round people. The boys are strong, healthy and happy. Everyone can see I am a good Mummy (and Paul is a brilliant Daddy of course). No-one is going to take our children away!
Anyhow, for many years, we have taken the children out of school for occasional, short, term-time holidays. We always asked for permission, and it was always given. Head teachers had discretion to grant families up to two weeks holiday in school time. Our kids had good attendance records, always caught up with the work they missed, and if we hadn't taken holidays in term time we would not have been able to afford them at all. (Although we never put the cost as a factor when asking the schools for holidays, it has always been understood that for most families this is the overriding issue).
Our fortunes have improved a little in recent years (partly due to my writing, I am proud to say) and also since the girls have been at secondary school they have not wanted to miss school, so we have not taken term-time holidays in the last couple of years. And now the law has changed, and we have been told that head teachers can no longer give permission for term time holidays.
Anyway, a long time ago Paul and I promised the boys a trip to Legoland and a night at the Legoland hotel. When I checked the prices I baulked - but the little one kept reminding me of my promise. he may be only six, but he's not silly. So eventually I took the plunge and booked it for Thursday and Friday of last week, although the cost was prohibitive - several hundred pounds for one night in the hotel and two days in the park. I booked a term time break, because otherwise the cost would have literally doubled, which would have put the excursion completely out of our reach.
We didn't take the girls. They don't like to miss school, as I said, and they are a bit old for Legoland anyhow. They didn't mind not coming along - it was their idea. We took them to school on Thursday morning, and arranged for them to stay with friends that evening and go to school with them the next day. On Friday evening they had dinner with friends and went to choir practice - we picked them up from there.
At first I thought I would fib to the schools and say the boys were poorly for a couple of days. I knew I would not get permission to take them out of school, so what was the point of asking, I reasoned? But then I thought again - I don't want to set a bad example to the children (to teach them to lie). And I didn't want them to have to worry about letting something slip to their friends. So I did ask the schools for permission - and they said no, as expected, even though I said it was an educational excursion (which it was in a way, the younger one is currently studying Lego as a topic at his Infant School!)
It was a great trip, although I was worried about the girls, who both managed to develop colds in the day before we left. They were fine though, of course; we were in constant contact by phone and text and they had a nice time with their friends.
The point that I am trying to make here is that self-esteem is so important in this life. How we think of ourselves is central to how we feel about life - and to how other people feel about us. The concept of a strong 'sense of self' might seem airy-fairy and something to be scoffed at by those who have never had mental health problems - but those who have suffered in this way will understand exactly how important it is. In those who have had serious mental breakdowns, especially those who have ended up with a diagnosis of schizophrenia, re-building a sense of self (or perhaps even building one from scratch) is crucial to achieving a full recovery.
The reason I have told the Legoland story here is that it illustrates the need I so often feel to justify myself and my actions. Paul doesn't worry about this sort of thing like I do. He makes a decision and sticks to it according to what he feels is right, and he doesn't think about anyone else's actions or reactions when he is making that decision. I, on the other hand, waste a good deal of time and effort in worrying about what other people think of me.
I know am a good parent - so why do I always feel the need to prove it? I know it's because of how I grew up, because I had so little support or security. I am still looking for love and approval from the people around me. But that's ridiculous. All that was wrong in my life is history - it is donkey's years ago now. I am forty-five years old! It is time I held my head up high, stopped worrying about what people think of me, and just got on with my life.
So that's the plan.
Oh, and by the way - my ebook is on sale at the moment through Amazon UK, for just 99p. You can click on the link at the top of this page to buy a copy - pass the word on to anyone you think might be interested. I can only do a promotion like this once every few months - I will do one in the USA soon too, probably next week.
Now, I probably should not be posting about this, because above all else I am a responsible parent and I never do anything to give the opposite impression. Ever since my eldest was taken from me as a baby, the last time I was sectioned (and the last time I ever will be!) I have been slightly paranoid about anyone ever accusing me of being a bad parent and removing my kids. It's not going to happen - the girls are at secondary school now, model students and brilliant all-round people. The boys are strong, healthy and happy. Everyone can see I am a good Mummy (and Paul is a brilliant Daddy of course). No-one is going to take our children away!
Anyhow, for many years, we have taken the children out of school for occasional, short, term-time holidays. We always asked for permission, and it was always given. Head teachers had discretion to grant families up to two weeks holiday in school time. Our kids had good attendance records, always caught up with the work they missed, and if we hadn't taken holidays in term time we would not have been able to afford them at all. (Although we never put the cost as a factor when asking the schools for holidays, it has always been understood that for most families this is the overriding issue).
Our fortunes have improved a little in recent years (partly due to my writing, I am proud to say) and also since the girls have been at secondary school they have not wanted to miss school, so we have not taken term-time holidays in the last couple of years. And now the law has changed, and we have been told that head teachers can no longer give permission for term time holidays.
Anyway, a long time ago Paul and I promised the boys a trip to Legoland and a night at the Legoland hotel. When I checked the prices I baulked - but the little one kept reminding me of my promise. he may be only six, but he's not silly. So eventually I took the plunge and booked it for Thursday and Friday of last week, although the cost was prohibitive - several hundred pounds for one night in the hotel and two days in the park. I booked a term time break, because otherwise the cost would have literally doubled, which would have put the excursion completely out of our reach.
We didn't take the girls. They don't like to miss school, as I said, and they are a bit old for Legoland anyhow. They didn't mind not coming along - it was their idea. We took them to school on Thursday morning, and arranged for them to stay with friends that evening and go to school with them the next day. On Friday evening they had dinner with friends and went to choir practice - we picked them up from there.
At first I thought I would fib to the schools and say the boys were poorly for a couple of days. I knew I would not get permission to take them out of school, so what was the point of asking, I reasoned? But then I thought again - I don't want to set a bad example to the children (to teach them to lie). And I didn't want them to have to worry about letting something slip to their friends. So I did ask the schools for permission - and they said no, as expected, even though I said it was an educational excursion (which it was in a way, the younger one is currently studying Lego as a topic at his Infant School!)
It was a great trip, although I was worried about the girls, who both managed to develop colds in the day before we left. They were fine though, of course; we were in constant contact by phone and text and they had a nice time with their friends.
The point that I am trying to make here is that self-esteem is so important in this life. How we think of ourselves is central to how we feel about life - and to how other people feel about us. The concept of a strong 'sense of self' might seem airy-fairy and something to be scoffed at by those who have never had mental health problems - but those who have suffered in this way will understand exactly how important it is. In those who have had serious mental breakdowns, especially those who have ended up with a diagnosis of schizophrenia, re-building a sense of self (or perhaps even building one from scratch) is crucial to achieving a full recovery.
The reason I have told the Legoland story here is that it illustrates the need I so often feel to justify myself and my actions. Paul doesn't worry about this sort of thing like I do. He makes a decision and sticks to it according to what he feels is right, and he doesn't think about anyone else's actions or reactions when he is making that decision. I, on the other hand, waste a good deal of time and effort in worrying about what other people think of me.
I know am a good parent - so why do I always feel the need to prove it? I know it's because of how I grew up, because I had so little support or security. I am still looking for love and approval from the people around me. But that's ridiculous. All that was wrong in my life is history - it is donkey's years ago now. I am forty-five years old! It is time I held my head up high, stopped worrying about what people think of me, and just got on with my life.
So that's the plan.
Oh, and by the way - my ebook is on sale at the moment through Amazon UK, for just 99p. You can click on the link at the top of this page to buy a copy - pass the word on to anyone you think might be interested. I can only do a promotion like this once every few months - I will do one in the USA soon too, probably next week.
Tuesday, 9 September 2014
Work and Play - keeping a balance
Does anyone ever get the balance right in life, I wonder? Human beings need to work, in my opinion, because otherwise our lives would have little shape and we wouldn't appreciate the times we get to play so much. The wok, of course, doesn't have to be paid. I was perfectly happy for many years bringing up the children and looking after our home, which took a good deal of effort but was very worthwhile and made me feel fulfilled although it didn't result in a wage.
Now, however, I am working in the hope that I will achieve a decent income, and that is where things have started to get a little askew. Leaving aside the fact that writing is an art and should be done for the love of it alone - which may be true, but is not practical - payment for an activity is a way of recognising its worth.
But, if you are self-employed, the pressure is on - to work as hard as possible, to achieve as much as possible, in the shortest space of time possible. Unless, of course, you are one of those very well-balanced people - like my husband - who refuse to be rushed.
Yesterday, I went for a walk with friends. One of them is about to start her second year at University, and knows she will have little time to socialise once the new term begins. The other is someone I see most days, but rarely find the time to chat to properly, since I have started writing every day. So I knew I should spend time with them - and I enjoyed it - but throughout the morning I kept harking back to the writing I 'should' be doing at home. Feeling guilty.
By the time I did get home, I was not really in the mood for writing, probably because I had spent the morning winding myself up about not doing it. I did manage a couple of thousand words eventually though, and I have knuckled down to it properly this morning, so I have probably caught up on the time I missed yesterday.
What this episode brought home to me, though, is that we have to enjoy life. Life is a treat, friends are a boon. And every minute that passes, won't happen again. We need to make the most of it all.
Balance is an essential part of good mental health - I'm sure of it. Although maybe I'm just trying to justify the fact that I'm about to take some time off for a walk, on this lovely sunny afternoon.
Now, however, I am working in the hope that I will achieve a decent income, and that is where things have started to get a little askew. Leaving aside the fact that writing is an art and should be done for the love of it alone - which may be true, but is not practical - payment for an activity is a way of recognising its worth.
But, if you are self-employed, the pressure is on - to work as hard as possible, to achieve as much as possible, in the shortest space of time possible. Unless, of course, you are one of those very well-balanced people - like my husband - who refuse to be rushed.
Yesterday, I went for a walk with friends. One of them is about to start her second year at University, and knows she will have little time to socialise once the new term begins. The other is someone I see most days, but rarely find the time to chat to properly, since I have started writing every day. So I knew I should spend time with them - and I enjoyed it - but throughout the morning I kept harking back to the writing I 'should' be doing at home. Feeling guilty.
By the time I did get home, I was not really in the mood for writing, probably because I had spent the morning winding myself up about not doing it. I did manage a couple of thousand words eventually though, and I have knuckled down to it properly this morning, so I have probably caught up on the time I missed yesterday.
What this episode brought home to me, though, is that we have to enjoy life. Life is a treat, friends are a boon. And every minute that passes, won't happen again. We need to make the most of it all.
Balance is an essential part of good mental health - I'm sure of it. Although maybe I'm just trying to justify the fact that I'm about to take some time off for a walk, on this lovely sunny afternoon.
Friday, 5 September 2014
Back to Work!
The kids have all returned to school this week - one on Monday (poor boy) the other three on Wednesday. So I have been able to get on with my writing, and so far it is going well. My recovery book is nearing completion - although reading back on this blog I see that I have been claiming that for ages, most recently in June when my word count was up at 40,000 and I was steaming ahead. I honestly thought then the book would be finished by the end of the summer term. Now I am at about 55k words, and aiming for World Mental Health Day, which is on the 10th October. That may turn out to be a bit optimistic, but has certainly put the wind into my sails, or the fire under my backside, or (insert cliché of choice).
World Mental Health Day this year is themed around the subject 'Living with Schizophrenia' so I thought that might help garner some publicity. (It's awkward sometimes, the business of selling books. Being commercial about it seems a bit crass, but it is the only way I can afford to carry out writing, and writing is my raison d'etre - without it I would be lost).
I want my new book to be clear about the fact that recovery is possible and real. I am writing it as a memoir again - pure narrative - but with an additional text book-ish section at the end that lays out what I think are the various factors that aid recovery and how people can work towards their own wellness.
So, all I have to do now is sit down every day and concentrate. The worst bit is just before I get started in the morning. Not always, but sometimes, I begin to doubt that there is any need in the world for a book like this, that it's utter rubbish and so on. But I find that once I get started writing the negativity disappears, the words begin to flow and I start to enjoy myself - and enjoying myself is the real motivation for writing.
After about an hour I find that the ideas start to come faster than I can get them on the screen and then I just write in note form, to get them down. Then I'll take a break and go back to it, working more slowly and carefully, until I get tired or over-stimulated and start to speed up again. The next day I go back, checking the narrative and re-writing it, and padding out any notes again. There's a lot of work to do here - a good part of the book is still in note form.
The trouble with the book at the moment is that the temptation is usually to tell the story rather than show it - but I want this book to be readable, as the last one was. It may lack the drama of the last book but that does not mean it has to be uninteresting. So I am trying to string it out, to tell it in an engaging way. It would be a lot more interesting, I think, if I allowed myself to write about my children. They are such fun, so engaging; their characters are so mesmerising and their achievements so impressive. They are also so funny at times...
But despite the fact that family life is the reason for a lot of my current happiness, I know that it's not the answer for everyone. And there is always the danger that pages of ravings about my wonderful children would not be that fascinating to a reader who has no connection to them. Also, of course, my children would be mortified if I wrote about them. So I'm writing about the dogs instead. Yes, really. And of course, about all the mental health stuff I have been doing over the last few years - and various events in my own life. My personal journey. I hope it doesn't sound too boring. It's honestly not.
At least, I hope not. I hope some of you reading this will buy the book and decide for yourselves whether it is interesting or useful in any way. I'm really excited that the day of publication is drawing near!
World Mental Health Day this year is themed around the subject 'Living with Schizophrenia' so I thought that might help garner some publicity. (It's awkward sometimes, the business of selling books. Being commercial about it seems a bit crass, but it is the only way I can afford to carry out writing, and writing is my raison d'etre - without it I would be lost).
I want my new book to be clear about the fact that recovery is possible and real. I am writing it as a memoir again - pure narrative - but with an additional text book-ish section at the end that lays out what I think are the various factors that aid recovery and how people can work towards their own wellness.
So, all I have to do now is sit down every day and concentrate. The worst bit is just before I get started in the morning. Not always, but sometimes, I begin to doubt that there is any need in the world for a book like this, that it's utter rubbish and so on. But I find that once I get started writing the negativity disappears, the words begin to flow and I start to enjoy myself - and enjoying myself is the real motivation for writing.
After about an hour I find that the ideas start to come faster than I can get them on the screen and then I just write in note form, to get them down. Then I'll take a break and go back to it, working more slowly and carefully, until I get tired or over-stimulated and start to speed up again. The next day I go back, checking the narrative and re-writing it, and padding out any notes again. There's a lot of work to do here - a good part of the book is still in note form.
The trouble with the book at the moment is that the temptation is usually to tell the story rather than show it - but I want this book to be readable, as the last one was. It may lack the drama of the last book but that does not mean it has to be uninteresting. So I am trying to string it out, to tell it in an engaging way. It would be a lot more interesting, I think, if I allowed myself to write about my children. They are such fun, so engaging; their characters are so mesmerising and their achievements so impressive. They are also so funny at times...
But despite the fact that family life is the reason for a lot of my current happiness, I know that it's not the answer for everyone. And there is always the danger that pages of ravings about my wonderful children would not be that fascinating to a reader who has no connection to them. Also, of course, my children would be mortified if I wrote about them. So I'm writing about the dogs instead. Yes, really. And of course, about all the mental health stuff I have been doing over the last few years - and various events in my own life. My personal journey. I hope it doesn't sound too boring. It's honestly not.
At least, I hope not. I hope some of you reading this will buy the book and decide for yourselves whether it is interesting or useful in any way. I'm really excited that the day of publication is drawing near!
Wednesday, 27 August 2014
Schizophrenia - Stuck with it?
Well, it is still the summer holidays but the weather has changed dramatically - it is damp and drizzly to say the least. I took the kids to the beach today and we got caught in a bit of a downpour. Luckily we had a beach hut to shelter us, but even so it was a wet experience.
Since the weather has not been good we have been at home more over the last few days, so I have tidied up the house a bit and bought some school uniform, new shoes and so on for the kids. It's probably better this way - the poor weather gives us a chance to drag ourselves away from the beach, wind down from the holidays and gear ourselves up for the new start of term. I am looking forward to re-engaging with the world as an adult - to getting on with my writing and back to the conversations on Twitter and Facebook which help me publicise my work but also help to connect me to the wider world. In fact, I logged into Twitter yesterday, although once I was there I wasn't sure what else to say, apart from 'Hi, I'm back'. Which one lady, very sweetly, favourited.
So here I am on my blog. This time I do know what I want to say. I want to write a bit about the diagnosis of schizophrenia. I've written about it before, several times, but I need to write more, because there's a feeling of injustice and frustration that's been building in me recently. I sense that the diagnosis is not going to go away - not for me, not for any of us who have been lumbered with it. It's a disaster, the diagnosis.
World Mental Health Day this year is about 'Living with Schizophrenia' - and as soon as I knew that, I knew it would not help. It is the word itself that is the problem. The word stigmatises people and takes away any hope of normality from them. Nobody sees any further. The campaigns are all a waste of time and money - they fiddle around the edges and refuse to acknowledge the problem. In the public consciousness, the word 'schizophrenic' equals 'dangerous lunatic'. That is how it is, and the only way to change that is by changing the word.
I'm not exaggerating. The other day I had a phone call from an organisation who were carrying out a survey on behalf of Public Health England. They wanted to monitor the activity levels in our household and I was able to answer all the questions in a way that made me sound like a pretty good mother - yes, we swim in the sea, cycle, run, etc, almost every day. I did admit that it is because it is the summer and we live near the beach plus I am currently on a health drive - we have not always been this 'good' historically.
Anyway, by the end of the interview I was feeling quite good about myself. But then the lad on the other end of the phone asked, 'Do you have any disability or long term illness?' or words to that effect. And I said no. Because I don't - I am well. But it left a bit of a bad taste, because in a way I was lying - officially I do have a long term illness, a disability even. Or I am supposed to have. Or something. But I knew that I couldn't tell that boy on the phone that I have a diagnosis of schizophrenia - because it would impact on everything I had just told him. He would assume that I was batty, and everything I had just told him would consequently be open to doubt. Plus, I am not actually disabled or ill. I know that, even if it is not publicly recognised by mental health professionals. I am okay. I just am!
But as soon as I say, 'I have a diagnosis of schizophrenia' people regard me differently. Even friends. People who might once have laughed at a remark I made, now sometimes wonder if I am in fact a little mad when I make the same remark. It's not their fault. It's the word, and the connotations it has. It's also the fact that we respect physicians, and believe the truth of what they tell us.
Look at like this for a minute. Forget the 'mental' illness and just think illness. I was ill, severely ill, three times in my life. I was in hospital for several months each time and took a long while to convalesce after. But now I have been well for fourteen years. I don't need drugs, I am capable and active. I function absolutely normally in every part of my life. Ergo, I am better.
Now, if I'd had cancer, no-one would say to me, 'You're not better. You will never be better. You are a cancer'. But with 'schizophrenia' they do. Even though there is no test for the presence or absence of this 'disease'. How can that be right?
I know I have banged on about all this before, and I know it's not going to change anything. I'm just getting really frustrated about it all and it helps to sound off. I caught myself wishing recently that I had never written my memoir, or that I had written it as fiction, or under a pseudonym. But when I think back I remember why I did it the way I did - I needed to be open about the whole thing. And that did me good; I don't regret it for that reason. But where it went wrong was that I thought by being open I could help others, that I could have some impact on how mental health is regarded. That I could explain how wrong a diagnosis of schizophrenia is, how cruel, and that people would listen and understand and change it as a result.
When I think back, that attitude seems so naïve. For several years I tried - I spoke to the Schizophrenia Commission and to various other organisations through Rethink, I went up to Newcastle University and spoke to students there, did the same locally through links I established at Bournemouth University. For all that time I thought that eventually someone would understand the things I was trying to explain - how a diagnosis of schizophrenia damages the individual, destroys his or her potential. Sucks the self-belief out of them. How that diagnosis will affect the person all through their life, stop them recovering, stop them trying to recover. Make them hopeless.
I have explored all sorts of avenues through this over the years. Anti-medication, anti-psychiatry. I have met many fascinating people and interacted with many more over the internet. But it's not all black and white and it never will be. Many people in the mental health business genuinely want to help others, but are hampered by the system. Still, we need some sort of system, some sort of help for the emotionally distressed. I can come up with various theories as to how this should be done - I would suggest lifting them out of penury for a start, giving them some sort of security, some self-belief, a job... Never hospitalising, never forcibly medicating...
There's more, but what would be the point? I can't change anything. It's about human beings and their interactions, ultimately. About what they should or shouldn't be allowed to do to one another, what is humane and what is not. What is helpful, what is kind and decent behaviour. In the name of trying to understand and improve the system I have joined Facebook groups, engaged in conversations through Twitter, been to mental health conferences. Listened to debate, taken part in some of it.
And here's my conclusion. The quickest, easiest change to the system would be to stop labelling people with schizophrenia. It would give many people hope where there was none. I have occasionally met people who welcome a diagnosis of schizophrenia - usually carers, for whom this diagnosis opens the doors to the treatment and resources they feel their loved one deserves. Those that they are trying to help though, would be more likely to help themselves if they were not labelled in this way. I have only met one boy (he was in his late twenties, but still very much a boy) who welcomed the diagnosis for himself. He said that he was 'proud to be a schizophrenic'. I was appalled at the time, but when I thought about it later, I realised what he meant - the label absolved him of responsibility and emphasised the seriousness of his illness. It signalled to those around him that there was no point in them trying to help, that he was beyond help and that therefore they should leave him alone. He was not ready to get better, basically - but if he ever reaches the point where he is - when he wants to be part of society again - he will find himself hampered beyond belief by that label. I know - I was the same.
It's just cruel. It is. This was recognised with manic depression - no-one wanted to be 'manic', the label was unpleasant and demeaning, so it was renamed bipolar disorder - which caught on quickly once it was 'endorsed' by various celebrities.
Too many people still think 'Schizophrenia' means something - that it is a necessary, helpful, medical term. It really isn't. And I won't go through it all now - I'm tired and I have a houseful of children at the moment, who require supervision (that's why the arguments in this post are so fragmented. I keep having to leave the computer and tell them to stop chucking water bombs or to turn down the volume on the TV or refrain from squirting each other with the hosepipe. There are too many of them to sit quietly and play constructively and anyway I suppose I should be glad that they are being active - I am just a little worried that it may all end in tears. Probably the tears of my youngest child). I will just say again that there is no test for schizophrenia, no proof of its presence or absence. It is a notion and a nebulous one at that. The medications for bipolar and schizophrenia are the same, many of the symptoms are the same. Other conditions - or 'diseases' are also pretty much indistinguishable from these two.
I am starting to see that I can't change any of that - that it may never change. It makes me feel helpless and angry, but I know that all I can do is ignore it.
I know I am not a schizophrenic. I just do. It took me ages to reject the diagnosis, but it is the only way I could survive. Nothing else makes sense. One day I will probably fork out a couple of hundred quid to have a professional - a private psychiatrist - agree that I am not mad, because none of the NHS ones will stick their necks out to do so, and I need that affirmation. I shouldn't, but I do. Being told you're mad is not good for your mental health.
Finally - anyone reading this who has been diagnosed with schizophrenia, please ignore your diagnosis. At least two members of my family have done this. Years ago they were told they had schizophrenia but they dismissed the notion and got on with their existence. Now their lives are not damaged in the same way as mine. They can be eccentric, maverick, alcoholic. They can be as chaotic as they wish - but they are not seen by others as 'mad'. (Nor should they be, they are human beings, and have a right to live their lives as they wish, as all people do). I am a good mother, a teetotaller, honest, hard-working etc, etc. I go out of my way to be 'normal' but the harder I try the more futile my efforts become. And all because I bowed to what I thought was valid medical knowledge from mental health professionals and accepted their hateful pronouncement on the validity of my self.
Bah! Grrr! And other pointless protests!
Anyway - on the bright side, I have nearly finished the recovery book (yes, I know, I have been saying that for years). It has just occurred to me that I if I really pull my finger out I could launch it in time for World Mental Health Day, which could be useful.
Because in real life the issue is not so much 'Living with Schizophrenia' as 'Living with the Consequences of a Diagnosis of Schizophrenia'.
Since the weather has not been good we have been at home more over the last few days, so I have tidied up the house a bit and bought some school uniform, new shoes and so on for the kids. It's probably better this way - the poor weather gives us a chance to drag ourselves away from the beach, wind down from the holidays and gear ourselves up for the new start of term. I am looking forward to re-engaging with the world as an adult - to getting on with my writing and back to the conversations on Twitter and Facebook which help me publicise my work but also help to connect me to the wider world. In fact, I logged into Twitter yesterday, although once I was there I wasn't sure what else to say, apart from 'Hi, I'm back'. Which one lady, very sweetly, favourited.
So here I am on my blog. This time I do know what I want to say. I want to write a bit about the diagnosis of schizophrenia. I've written about it before, several times, but I need to write more, because there's a feeling of injustice and frustration that's been building in me recently. I sense that the diagnosis is not going to go away - not for me, not for any of us who have been lumbered with it. It's a disaster, the diagnosis.
World Mental Health Day this year is about 'Living with Schizophrenia' - and as soon as I knew that, I knew it would not help. It is the word itself that is the problem. The word stigmatises people and takes away any hope of normality from them. Nobody sees any further. The campaigns are all a waste of time and money - they fiddle around the edges and refuse to acknowledge the problem. In the public consciousness, the word 'schizophrenic' equals 'dangerous lunatic'. That is how it is, and the only way to change that is by changing the word.
I'm not exaggerating. The other day I had a phone call from an organisation who were carrying out a survey on behalf of Public Health England. They wanted to monitor the activity levels in our household and I was able to answer all the questions in a way that made me sound like a pretty good mother - yes, we swim in the sea, cycle, run, etc, almost every day. I did admit that it is because it is the summer and we live near the beach plus I am currently on a health drive - we have not always been this 'good' historically.
Anyway, by the end of the interview I was feeling quite good about myself. But then the lad on the other end of the phone asked, 'Do you have any disability or long term illness?' or words to that effect. And I said no. Because I don't - I am well. But it left a bit of a bad taste, because in a way I was lying - officially I do have a long term illness, a disability even. Or I am supposed to have. Or something. But I knew that I couldn't tell that boy on the phone that I have a diagnosis of schizophrenia - because it would impact on everything I had just told him. He would assume that I was batty, and everything I had just told him would consequently be open to doubt. Plus, I am not actually disabled or ill. I know that, even if it is not publicly recognised by mental health professionals. I am okay. I just am!
But as soon as I say, 'I have a diagnosis of schizophrenia' people regard me differently. Even friends. People who might once have laughed at a remark I made, now sometimes wonder if I am in fact a little mad when I make the same remark. It's not their fault. It's the word, and the connotations it has. It's also the fact that we respect physicians, and believe the truth of what they tell us.
Look at like this for a minute. Forget the 'mental' illness and just think illness. I was ill, severely ill, three times in my life. I was in hospital for several months each time and took a long while to convalesce after. But now I have been well for fourteen years. I don't need drugs, I am capable and active. I function absolutely normally in every part of my life. Ergo, I am better.
Now, if I'd had cancer, no-one would say to me, 'You're not better. You will never be better. You are a cancer'. But with 'schizophrenia' they do. Even though there is no test for the presence or absence of this 'disease'. How can that be right?
I know I have banged on about all this before, and I know it's not going to change anything. I'm just getting really frustrated about it all and it helps to sound off. I caught myself wishing recently that I had never written my memoir, or that I had written it as fiction, or under a pseudonym. But when I think back I remember why I did it the way I did - I needed to be open about the whole thing. And that did me good; I don't regret it for that reason. But where it went wrong was that I thought by being open I could help others, that I could have some impact on how mental health is regarded. That I could explain how wrong a diagnosis of schizophrenia is, how cruel, and that people would listen and understand and change it as a result.
When I think back, that attitude seems so naïve. For several years I tried - I spoke to the Schizophrenia Commission and to various other organisations through Rethink, I went up to Newcastle University and spoke to students there, did the same locally through links I established at Bournemouth University. For all that time I thought that eventually someone would understand the things I was trying to explain - how a diagnosis of schizophrenia damages the individual, destroys his or her potential. Sucks the self-belief out of them. How that diagnosis will affect the person all through their life, stop them recovering, stop them trying to recover. Make them hopeless.
I have explored all sorts of avenues through this over the years. Anti-medication, anti-psychiatry. I have met many fascinating people and interacted with many more over the internet. But it's not all black and white and it never will be. Many people in the mental health business genuinely want to help others, but are hampered by the system. Still, we need some sort of system, some sort of help for the emotionally distressed. I can come up with various theories as to how this should be done - I would suggest lifting them out of penury for a start, giving them some sort of security, some self-belief, a job... Never hospitalising, never forcibly medicating...
There's more, but what would be the point? I can't change anything. It's about human beings and their interactions, ultimately. About what they should or shouldn't be allowed to do to one another, what is humane and what is not. What is helpful, what is kind and decent behaviour. In the name of trying to understand and improve the system I have joined Facebook groups, engaged in conversations through Twitter, been to mental health conferences. Listened to debate, taken part in some of it.
And here's my conclusion. The quickest, easiest change to the system would be to stop labelling people with schizophrenia. It would give many people hope where there was none. I have occasionally met people who welcome a diagnosis of schizophrenia - usually carers, for whom this diagnosis opens the doors to the treatment and resources they feel their loved one deserves. Those that they are trying to help though, would be more likely to help themselves if they were not labelled in this way. I have only met one boy (he was in his late twenties, but still very much a boy) who welcomed the diagnosis for himself. He said that he was 'proud to be a schizophrenic'. I was appalled at the time, but when I thought about it later, I realised what he meant - the label absolved him of responsibility and emphasised the seriousness of his illness. It signalled to those around him that there was no point in them trying to help, that he was beyond help and that therefore they should leave him alone. He was not ready to get better, basically - but if he ever reaches the point where he is - when he wants to be part of society again - he will find himself hampered beyond belief by that label. I know - I was the same.
It's just cruel. It is. This was recognised with manic depression - no-one wanted to be 'manic', the label was unpleasant and demeaning, so it was renamed bipolar disorder - which caught on quickly once it was 'endorsed' by various celebrities.
Too many people still think 'Schizophrenia' means something - that it is a necessary, helpful, medical term. It really isn't. And I won't go through it all now - I'm tired and I have a houseful of children at the moment, who require supervision (that's why the arguments in this post are so fragmented. I keep having to leave the computer and tell them to stop chucking water bombs or to turn down the volume on the TV or refrain from squirting each other with the hosepipe. There are too many of them to sit quietly and play constructively and anyway I suppose I should be glad that they are being active - I am just a little worried that it may all end in tears. Probably the tears of my youngest child). I will just say again that there is no test for schizophrenia, no proof of its presence or absence. It is a notion and a nebulous one at that. The medications for bipolar and schizophrenia are the same, many of the symptoms are the same. Other conditions - or 'diseases' are also pretty much indistinguishable from these two.
I am starting to see that I can't change any of that - that it may never change. It makes me feel helpless and angry, but I know that all I can do is ignore it.
I know I am not a schizophrenic. I just do. It took me ages to reject the diagnosis, but it is the only way I could survive. Nothing else makes sense. One day I will probably fork out a couple of hundred quid to have a professional - a private psychiatrist - agree that I am not mad, because none of the NHS ones will stick their necks out to do so, and I need that affirmation. I shouldn't, but I do. Being told you're mad is not good for your mental health.
Finally - anyone reading this who has been diagnosed with schizophrenia, please ignore your diagnosis. At least two members of my family have done this. Years ago they were told they had schizophrenia but they dismissed the notion and got on with their existence. Now their lives are not damaged in the same way as mine. They can be eccentric, maverick, alcoholic. They can be as chaotic as they wish - but they are not seen by others as 'mad'. (Nor should they be, they are human beings, and have a right to live their lives as they wish, as all people do). I am a good mother, a teetotaller, honest, hard-working etc, etc. I go out of my way to be 'normal' but the harder I try the more futile my efforts become. And all because I bowed to what I thought was valid medical knowledge from mental health professionals and accepted their hateful pronouncement on the validity of my self.
Bah! Grrr! And other pointless protests!
Anyway - on the bright side, I have nearly finished the recovery book (yes, I know, I have been saying that for years). It has just occurred to me that I if I really pull my finger out I could launch it in time for World Mental Health Day, which could be useful.
Because in real life the issue is not so much 'Living with Schizophrenia' as 'Living with the Consequences of a Diagnosis of Schizophrenia'.
Tuesday, 5 August 2014
Summer Holidays
Just thought I should post on here, as I haven't in ages. I haven't much to say though. Life is quiet at the mo. I love the summer holidays, and the opportunities it brings to take everything more slowly, to spend quality time with my family. Anxiety and negativity take a backseat. All is good.
I am still managing to write a little, here and there, and I know I will get back to that properly in September. There's plenty of time. I got frazzled a couple of months ago, trying to do everything all at once. Now I've taken a step back - I've learned that life can't be, and shouldn't be, hurried.
So that's me. Still here. Still happy to be here.
More anon. X.
I am still managing to write a little, here and there, and I know I will get back to that properly in September. There's plenty of time. I got frazzled a couple of months ago, trying to do everything all at once. Now I've taken a step back - I've learned that life can't be, and shouldn't be, hurried.
So that's me. Still here. Still happy to be here.
More anon. X.
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