Tuesday, 11 October 2011

University Beckons

Hi Guys

The title of this post is a bit optimistic - the University is not beckoning me yet, except in my dreams.  I didn't make it there yesterday, I ran out of time.  But I did get there today - went to an author talk (which turned out to be more of a round table discussion) with Minette Walters (of The Ice House and many other stories).  She was lovely - very articulate, and passionate about her cause, which in this case was fund-raising for a charity called 'Footprints' which helps to rehabilitate ex-offenders. 

The other people present were mostly connected with the University, or the NHS Trust.  Some were there because they had an interest in mental health, some just because they liked Minette Walters, some because they were interested in talking about funding for their own charities.  A mixed bunch, in other words, but all quite professional. 

And then there was me.  Everybody introduced themselves and said a bit about themselves.  I said I am a writer and a mother, and then admitted to having 'a diagnosis'.  I didn't say what, but then Minette talked a bit about depression and I realised that was probably the general assumption as to my problem

An interesting discussion ensued.  Minette talked about funding for a while - I didn't realise there was so much competition between charities for access to the same pot of money.  She spoke of the differences between central and local funding.  Then the discussion broadened onto offenders and the reasons for them ending up in prison, the fact that most of them have drug or alcohol addictions, or mental health problems.  Minette said that the only schizophrenics who are dangerous are those with paranoid schizophrenia.  My heart began to thump.  Other people pitched in, the word schizophrenia was being bandied about more and more, and the need for staying on medication was mentioned.  Then someone said that some schizophrenics actually don't want to be on medication because they enjoy their distorted view of the world.  None of this was said disparagingly, but I am pretty sure the discussion would not have taken place if anyone had known the nature of my 'diagnosis'.

By now I was going a bit red and my heart was thumping fit to burst.  I knew I had to say something, but I was so scared of drawing attention to myself.  But I told myself there was no real threat.  I took a deep breath.  I remembered Gianna's post yesterday on the Beyond Meds site about how we should focus on the issues about medication and about diagnoses.  So I knew what I needed to say.

And I said it!  I am not as articulate in person as I am on paper - I am working on this, but I have so little experience of speaking still.  (I only really learned to talk after I had the children, I was perpetually tongue tied before that.  I never learned the art of conversation as a child, I could only ever see the pointlessness of the spoken word).

But I said that my diagnosis is schizophrenia, and paranoid schizophrenia at that.  I should have said that the 'paranoid' refers to fear of others, not wanting to hurt them.  But I am sure they could all tell that I am not dangerous by looking at me.  I said that drugs often do more harm than good (well, that is what I was trying to say, I am not sure how clearly it came across).  I said that I am free of medication. 

They were all intrigued, and Minette was lovely.  Afterwards, she asked if I have finished a 'whole book' and was impressed when I said that I had.  She asked if I had a publisher, which is where if I had any sense I would have asked her to pass my details on to her agent.  But I am too thick for that.  I just muttered a while about how I have published on Amazon Kindle...  (Minette Walters writes a book most years.  How amazing is that?  That is where I need to get to).

Anyway, I got a chance to speak to the very nice man who is currently in charge of the Press Office at Bournemouth University, wrote my details down for him, and said that I would be happy to give a lecture of some kind, or a talk to students.  (They teach a lot of nursing students there).  I even directed him to this blog (hello, very nice man). 

I spoke to another couple of people afterwards, one of whom was very open minded (but so erudite it was hard to follow his train of conversation).  I told him about the success rate of treating psychosis in Finland, and aired my views about how drug companies have a vested interest in drugging people. 

One of the ladies then came up to thank me for speaking out about my diagnosis.  She works in dementia now, but worked in mental health for many years.  She seemed very pleasant and we had a good chat - until I aired my views about the unhelpfulness of diagnoses and the fact that although I have been told I have schizophrenia I don't necessarily believe it any more.  She immediately closed the conversation down, said goodbye and moved right away.  I was fine to speak to when she thought I was 'Owning my Illness' but once I disclosed that I was 'In Denial' she just couldn't cope. 

There is such a long way to go to get these people thinking out of the box that they have been taught to think in.  My problem is, that they will always expect me to be on the verge of another breakdown.  If I ever have one, then I will have proved them right.  If I die without having had another one, well then I will be dead.   I will never be accepted as 'normal' by mental health professionals while I am alive (or so it seems to me.  It would be nice if I am wrong here).  This particular lady was talking about brain scans - I said that I would be more than happy to be brain scanned if the whole population was brain scanned too.  I said it would be impossible to say that any one person was the 'most normal' and any other was the 'least normal'. 

But maybe the results of the brain scans would differ according to whether people had had fish for breakfast, or had been for a long walk the day before.  Or whether they were on psychiatric drugs, of course. 

What if David Cameron's brain scan purported to show that he had schizophrenia?  Would he be put on medication?  I tried to tell the woman that she should not judge - no human being should judge another, should have the power to 'diagnose' their mental health.  But she had already switched off and moved well away.   

Which was just as well, because I had parked outside the flat of an old friend and had promised to have tea with her when I returned.  This was at the sheltered housing project that had given me my first proper home, when I was in my mid twenties.  She is still there.  Happy enough.  She was very hospitable and we had a good chat.  What made me sad was that she is worried about the upcoming reviews of the incapacity benefit system, about how she would cope with less money.  I tried to reassure her that it would be fine - I am sure it will be.  But it reminded me of how mental health patients are kept in place by the benefit system in this country.  Protected by it too, of course.  But it is hard to get better when you are paid for being ill. 

I have seen a job advertised today, for one of the mental health charities, that I am definitely going to apply for.  Being at the University today, being part of a stimulating discussion, made me realise that I am not so very different from other people out there in the workforce, and that I have something to offer, especially in the mental health field.

The trouble here is (or might be, it is only my opinion) that I am coming at the issue of recovery from a different angle.  The medical model is so entrenched.  It is probably too late for those of my generation who have been on medication long term.  They need it, mentally and physically.  (I think, from observation).  But I would like to see the younger patients coming through the system getting a different deal.  I want to see them treated as they are in Finland, with the system of' 'Open Dialogue' so that their first experience of psychosis is also their last and so that they live long lives, as free of medication as the next 'sane' person. 

I feel that it is my duty to help people see that recovery - real recovery, not the re-defined version - is a real possibility.  Maybe I am not the only person I know who has survived a diagnosis of schizophrenia, but I am the only one I know who owns up to it.  Even the old friend I saw today, who shares my diagnosis, and who is on the dreaded 'depot' injections (which make her feel really ill, but does anyone care?)  keeps the whole thing to herself.  I don't blame her, or anyone else for doing this.  I did it myself for long enough.

But I have come out into the open now, and there is no turning back.  Next up - a job, I hope, with 'Time to Change' to help to continue to spread the message.

Hope you are not worn out from reading all this, guys. And, nice man from the Press Office at the University, please email me if you can see any use for the story of my experiences.  I am sure it would be helpful for your mental health nursing students....

Louise x.   


  1. You've hit so many nails on the head with this post, by pointing out the hypocrisy of many mental health advocates. Amazing that this knowledgeable group could cluck about schizophrenia while spreading falsehoods that they've bought from pharma and the medical-industrial juggernaut. They just don't "get" schizophrenia. Everybody "understands" depression, of course.

    My favorite line of your post:

    "I was fine to speak to when she thought I was 'Owning my Illness' but once I disclosed that I was 'In Denial' she just couldn't cope."

    Mind if I swipe your post for my blog today? Full credit to you, of course.

    Re David Cameron and a diagnosis of schizophrenia, I would have loved to say to the ex-Prime Minister of Norway, who spoke at an event that I attended this week, that nobody, but nobody would own up to a diagnosis of schizophrenia if they were in his position. Game over for any possibility of re-election. His time limited depression, while devastating, does not give him insight in schizophrenia, which, I would wager, he still thinks of as a chronic mental illness.

  2. Hi Rossa, I would love it if you use my post on your blog. Thank you. And thanks to your blog and those of others like you, hopefully the general population will become more enlightened, and less frightened, over time. Right now, I am not sure if I 'get' schizophrenia myself, but I am going to keep on trying! Toddler has been off school today, but I can't wait to get up to the University again tomorrow and confound a few more expectations. Louise. x