Saturday, 5 January 2013

Disability Benefits

I am supposed to be revising for my exam - but found myself on Twitter, and then found myself impassioned, following several threads, offering (unsought after) advice and thinking out loud in public...  Then looked at the time and realised that I am not going to get any more revision done tonight.  So I thought - I might as well get impassioned on my blog, where I  can express myself in whole sentences, not just however many characters Twitter allows (a hundred and sixty something?  Pah!)  So here I am.

First thing - saw Seaneen Molloy's Twitter feed - she is due to appear on Radio 4 tomorrow morning, speaking about benefits.  Apparently (I don't want to spend more time reading around all this just now, so am just writing from memory and perhaps limited understanding) John Bird of the Big Issue criticised the benefits culture, saying that benefits stop people (recovering?).  And Seaneen is going to appear on the radio in defence of benefits, saying that they helped her immensely, gave her time to gather herself and to recover.  I hope I have that right.

Benefits are a subject that are close to my heart.  I am not on them now, but sometimes I wish I were.  Although I don't really.  Let me explain.

I was on benefits for many years, although outwardly I was well.  I kept the fact that I was on benefits a secret, because I was ashamed.  I got the benefits because I have a diagnosis of schizophrenia, and the benefits continued despite the fact that I had no symptoms of psychosis and took no medication for many years.  However, I did suffer from extreme anxiety.  Panic attacks were a regular, often a daily, occurence in my life, and I was terrified of things that to other people would seem almost insignificant.  I was a nervous wreck if I had to drive my car on any road that necessitated me going faster than thirty miles an hour.  Social occasions would turn me into a blushing, sweating wreck.  And by social occasions I include every human interaction you can imagine.  I covered all this up pretty well, by the way.  But inside I was absolutely paralysed by fear.

Mostly, I was filled with fear because of the fact that I had been told that I was a schizophrenic, and I had been told that I would get worse as I got older, and so apparently another breakdown was always potentially just around the corner, and that could mean that my kids could be taken away, and perhaps I was capable of doing something awful to somebody because I was a schizophrenic.  And apart from all that I was very insecure and spent a lot of my time worrying about people not liking me and trying to get them to like me better, and worrying if they didn't...

And I had worked hard for most of my life, as a cleaner and waitress mostly (although I had a law degree) and now I was pretty busy looking after my four kids full time, but what I really wanted was a quiet job in an office somewhere during school hours so I could have some pin money but wouldn't feel guilty about being on benefits, but I knew I wouldn't last long in an office because of my nerves, and so I kept on taking the benefits and feeling guilty and worrying and panicking and blushing and sweating...

God, I was a mess!  I deserved that money!  But it didn't make me well.

What made me well was starting to write this blog, more than three years ago now.  Writing down how I felt day to day and what I did day to day, and what I was about as a person.  Which was mostly, at that point in time, just a mother, and a darned good one, even if I do say so myself.  Reading back what I had written and realising that I didn't sound all that mad.  Reading it again and realising that I didn't have to accept that I was a schizophrenic just because I had been told I was, when there was no evidence at all to back up that fact, and plenty of evidence to the contrary. 

Writing my book, and publishing it.  Opening up about my history, finding that my many friends still liked me, that nobody I was acquainted with suddenly seemed frightened of me.  Realising that my recovery had begun many years before, and might actually be complete now, or one day soon, when I was ready to recognise the fact. 

Getting off benefits was the last step. I was getting those benefits for being a schizophrenic, and I think in my heart I always knew that I was not a schizophrenic and that was why I felt guilty for having them.  In fact, I have learnt now that there is no such thing as schizophrenia, not as we are supposed to believe in it.  That may be too much for some people to handle - but thanks to the Internet I know that I am not the only person to recognise that manifestations of emotional distress do not always equate to mental illness, and/or that when a person is or has been mentally ill it need not be a lifelong condition.  Hopefully as time goes on, more people will become aware of all the issues. 

But anyway.  When I said at the beginning of this post that sometimes I wish I was back on benefits what I mean is that I would not feel guilty if I was on them again.  I would welcome them for the peace of mind they would provide.  All too often mental health problems are caused by money worries - panic sets in when you realise that you are in extreme danger, that you may not physically survive - I have been there, I know. 

But this is the problem with benefits too.  I haven't read the John Bird piece, I don't know how he puts his case (but I have read other stuff he has written and I have always found him very insightful.  Don't forget, he has been there too.  Down and out, I mean).  In my opinion, the problem with benefits is that they can stop people working to get better.  Because if they do relapse again, they will face the same danger as before - life with no financial support, danger of extinction. 

I am not sure of the solution.  I think perhaps anyone with a mental health diagnosis should get benefits for life - or until the diagnosis is taken away, because it stands in the way of recovery, stops people from finding decent work and so on.  (Especially in the case of 'schizophrenia'.  Nobody can really value themselves when they believe that they are 'schizophrenic'.  It is such a degrading term.

I think that if people on disability benefits do find work, and then relapse, their benefits should automatically be re-instated to the previous level.  I don't say this for myself - I have no intention of relapsing, and believe that I am safe from doing so, since I have finally allayed the anxiety that made me susceptible to nervous breakdown (sorry for repeating myself so often.  I do so because nobody can be expected to read all of the back posts on this blog!)

Anyway, I could write more about all this, but this piece has already taken more than half an hour (I should edit it really, but it will have to do as is.  I have an exam to take on Thursday!)

There are other things I would like to write about too.  I promised to do some physical health activist work for Rethink a month or so ago, and haven't got started yet.  They just sent me an email about obesity and diabetes being linked to 'schizophrenia' (it's the medication, stupid).   They also wrote about a 'schizophrenic' woman who didn't want to have a hysterectomy because she believed she didn't have cancer.  The lawyer appointed to act in her best interests also recommended that she shouldn't have the operation because there is quite a high risk that she will die in surgery (due to other factors, like her weight).  Shockingly, the judge decided that she should have the op, because her three adult children want her to have the best possible chance to live.  I was talking to Paul about this last night, and he couldn't get why I was so outraged - 'She's obviously delusional' he said.

Yes, but if my husband was found to have a brain tumour and chose not to have the operation, nobody would question his choice.  Because he is not 'schizophrenic' (even though the brain tumour might have caused him to lose his power of reasoning).  His choice would be respected.  He would have rights.  Even if I and our children wanted him to have the operation, he would not be forced to do so by any court.  Because he is a human being, not a 'schizophrenic'. 

And it is not just the woman's rights which have been disregarded.  The lawyer appointed to act in this woman's best interests was overruled by the judge in this case.  Why?  Because 'Schizophrenics' (even those with lawyers to look after them) are supposed to be less than human, and they are treated as such.  Therefore what her adult children want for her - the operation - is what will happen, regardless of what she wants and regardless of the risk (deemed too high by an independent lawyer) that she may die in surgery.  It's wrong.  It just is. 

But who's going to listen to me?  After all, I'm a schizophrenic.  Aren't I?

It's late, and I must go now.  Goodnight.       


  1. Hi,

    I can relate to you... I have schizophrenia and have benefits and am trying to work with some setbacks. I would like to get off of disability income for my self-esteem. However, until I get things stable financially I am stuck- stuck being limited and monitored by the government. I hate the fact that specific individuals think my income is a handout. Benefits bother me and my goal is gradually get off of them to move forward in my life.

  2. Hi Ashley

    Yes, you're right, benefits carry stigma, and they don't make lives comfortable - they sometimes act as a sop to those who have had their lives ruined by psychiatric diagnoses. It would be far better to enable people, while ensuring that they are comfortable and happy as far as possible. I have radio 4 on in the background and am about to listen to the programme - but I get the impression that it is about benefits in general, not just disability benefits. It's a huge subject - people are on benefits for all sorts of reasons, and some people do get stuck on them.

    I grew up with a group of people who had no intention of working, ever, and who just eked out a living on benefits (these were young people, my friends, not my family). I think they would all have been better off, and happier, working, but for various reasons, mostly their upbringing, they just weren't equipped to make these choices for themselves. They were not bad people. Disability benefits obviously deal with a completely different group of people - they are there to deal with different problems - but there is a surprising amount of overlap.

    Anyway, good luck to you. I am sure things will work out. Give yourself time, and try not to worry about anything!

    Louise x

  3. Excellent post. You ably demonstrate that there are two sides, at least, to every issue.

  4. I know where you are coming from. I feel so incredibly guilty for receiving benefits but I have to weigh up the pros and cons of it. The only pro is that I would no longer feel the guilt of taking benefits. The cons are that one of my retired parents would have to find work instead as there's no way I could work. And what chance would they have of finding work at their age? The guilt of accepting benefits would be replaced by the guilt of forcing my parents to find work.

    I know I've said this a million times but your book and blog has really, infinitely helped me. I can empathise with your "Who would listen to me, I'm just a schizophrenic!" as I feel exactly the same at times! But I know that there are thousands of other "schizophrenics" out there who feel similarly to us in the sense that the diagnosis is daunting. Scary even. The diagnosis of psychosis (my initial diagnosis) was scary enough but when schizophrenia became officially my diagnosis, I believed my life was over.

    Yet through reading your book, I began to write myself and then joined Twitter a few months later. You were my 2nd follower!! Joining twitter made me see just how many people were affected by not just schizophrenia but other mental illnesses. I knew the statistic was 1 in 4 but because mental illness is such a stigma, I rarely have conversations about it except in a professional capacity. And I've found that personal experience is a million times better than professional experience!

    So next time you feel like 'who would listen to me' remind yourself that AT LEAST 1 in 4 people will listen to you! There are many others who will listen too, people who know people with mental illness. Never say you're "just" a schizophrenic. You may be diagnosed with schizophrenia but people who survive the diagnosis are true heroes!

  5. This comment has been removed by the author.

  6. Thanks Katy.

    The best thing about writing this blog and my book has been hearing from people who have been helped by it. I am really glad that your life has improved so much in the past year. And you really shouldn't feel guilty about benefits - I honestly wish I had just appreciated them all the time I had them, instead of feeling bad about it. I definitely would not feel guilty if I had them back even now! You have been through enough, and the benefits are in place for a reason - to let you recover to the best of your ability with the minimum of stress. Make the most of it!

    I do resent the 'schizophrenia' label - I think it is an inhumane term to inflict on another human being, and far too many people sink under the weight of this diagnosis. I have no respect for any mental health professional who thinks that 'Schizophrenic' is a valid and acceptable term to apply to a human being, when there is so much evidence of the damage that it does to people's lives, and especially because of the fact that it is not even based in science, but just on supposition, observation, mind-reading and trial and error use of medications.

    The sooner the label is gone, the better. I don't believe in it for myself, or for anyone else. But you know that...

    Anyway, I am sure we will be in touch on Twitter soon. I found myself thinking of you and your warning to be careful of Twitter last night, when I was tweeting away far too late. You're right, it is a dangerously addictive use of time - but it keeps the brain active!

  7. Hi Rosssa.

    Thanks for your comment. There are always two sides... It is such a complicated issue, isn't it - benefits, I mean, but also mental health in general. What I do know is that human beings should not stand in judgement on one another, especially if they have no personal experience of a particular situation. Anybody who has not been mentally ill or cared for someone with a mental illness, or anybody who has never needed to be on benefits, is not well placed to criticise those who have suffered in this way.

    It is hard to explain how a person feels in the aftermath of an episode in a mental hospital - helpless, hopeless, almost incapable of thought or speech. At the age of 25, sitting in a GP surgery feeling this way, I was confused beyond belief when the GP refused to sign a sick note to entitle me to benefits and instead told me to go out and get a job. I may have looked well, but I was utterly broken inside. (I went out and looked for a job, predictably didn't get one, and probably would have ended up straight back inside the hospital, or worse, had another GP in the same surgery not signed the note).

    Also: When a person does have to sit in judgement on another (like a judge, in the case I wrote about above regarding the 'schizophrenic' woman with cancer) they should obviously be as impartial as possible. Discrimination on the basis of a mental health diagnosis is wrong. Legally and morally wrong.

    All the best, Rossa. xx

  8. In my son's case accepting disability benefit was the equivalent of accepting the label of "severely mentally ill" which he wasn't. He was driven psychotic by the antripsychotic meds he had been put on against his will. His psychosis was due to infection and delirium. It turned into a vicious circle. My son kept saying that he didn't want benefits and social services kept writing to him "you need benefits-come for an acessement" He felt that big brother was watching him and went on the run. Life can be like that sometimes.

  9. I do wonder if the fear of losing benefits helps to keep people compliant with with the medication. Some people seem almost frightened to recover - or to be seen to recover - in case they lose the prop of benefits, which is understandable but very sad and unfair on them. I hope your son remains well. It is good to hear from you again. Louise x

  10. Hi can i ask how you overcome your anxiety

  11. Hi. Basically, I came a long way simply by participating in life - by virtue of my children, I had a place in society, as a Mum. I wanted them to grow up to be confident - so I made a huge effort to take them out and about, to toddler groups and so on. I made friends at these places, went to their houses and on trips with them and so on - it helped my social anxiety a lot.

    I had an awful lot of residual fear though - I was a worrier and I used to catastrophise (I spent a lot of time winding myself up, wondering what was the worst that could happen in certain situations). My horizons narrowed drastically over the years - I wouldn't drive on dual carriageways or motorways, I avoided lots of social situations (when the kids wouldn't be there to give me a focus) ruled myself out of loads of things before I had even tried them. I had a lot of panic attacks - and eventually decided this was part of my personality.

    When I wrote my book a year and a half ago, this provided the catalyst for a lot of change. I felt very free - I had faced my worst fear, that people would find out that I had been labelled 'schizophrenic' and my life was subsequently not much different at all. I had booked a course of cognitive behavioural therapy on the NHS, in case I couldn't cope when the book was published - in fact there was such a long waiting list that the book had been out for many months before I got the therapy, and I had already coped, so that made me stronger.

    Then in the therapy itself, I was lucky to get a very knowledgeable practitioner, who turned out to be someone I felt able to trust. I told her my deepest secrets - which turned out not to be all that bad once they had seen the light of day. She worked through my thought processes with me - I realised that I had some pretty unfriendly internal attitudes towards myself and I learned to change these to positive and helpful thoughts, by learning to realise when I was mentally putting myself down, and replacing the kinder, better thoughts. I now have a realistic and positive 'mantra' (based on the truth that I am a good person) and I still repeat it to myself when the negative thoughts try to creep in.

    Also while I was having therapy, I stretched the limits of what I thought I was capable of. I went to a Rethink Mental Illness Member's Day, at the end of 2011, and spoke out in public there, during a preliminary meeting the Schizophrenia Commission. A few months later I travelled to London alone on the train to give evidence to that Commission - I was terrified, but it proved to be a very empowering experience.

    This comment is getting too long, but basically over the last year and a half I have taken every opportunity that comes my way - the highlight was travelling to Newcastle alone, by plane and train, to talk to students there - and I have learned and grown stronger from all these experiences. I now realise that I can deal with a lot more than I ever thought possible, and there is no need or room now for anxiety in my life. If it starts to creep back, I have strategies in place to assess what is happening and deal with it rationally. I am always aware that I need to monitor myself - I don't take my newfound confidence for granted, because the only time I ever felt confident in the past I turned out to be 'manic' and on the verge of a nervous breakdown - so now I aim for 'calmly confident'.

    I hope that helps. The Glasgow steps website is a good port of call - so is 'Beyond Meds'. Louise x