Thursday, 8 March 2012

I have only just stopped crying...

First off, apologies for the dramatic nature of the post title.  I have been crying as it happens, and it is not something that happens often, and not something that I am in the habit of advertising when it does happen.  I literally cannot remember the last time I cried - it must be at least a year ago.

Anyway, I will explain.  I went to the GP this morning, to ask for a referral to the local psychiatric team.  He asked why, I told him it is because I want them to do an assessment, to record that I have recovered from schizophrenia.  He said, after some umming and aahing (Why did I feel that was necessary? etc) that he could 'Sort of see what I was getting at' and would write the referral, although he thought I should know that they were unlikely to see me.  They have meetings, he told me (as if I didn't know about their 'meetings') and since they had already signed me off from their care in October 2008 (diagnosis 'complete remission schizophrenia') that was likely to be, from their point of view, the end of their dealings with me.  They are busy, and need to see people who are unwell.

The trouble has long been, and remains, that I am nowhere near as articulate in person as I am in the written form.  I tried to explain why in my opinion, 'remission'  is not the same as recovery and said that it is to do with how a person feels.  Of course, medically, remission is not the same as recovery and the GP knows that as well as I do - you can be in remission from cancer, but after five years you are declared to be recovered.  So why I should I accept this label for ever?

He said he couldn't see the point in all this because the illness would always be on my medical records.  I said it is not my aim to try to change that (although it would be nice to see those records - I have asked the appropriate manager of the local NHS Trust three times to do so, in writing, and never received a reply.) 

I am never going to deny that I was mentally ill - I was totally raving mad, three times, and it was awful.  But as I said to the GP, there should be some process of acknowledging recovery.  Look at it like this - if schizophrenia is a disease of the brain, something that will never get better, will get worse as a person gets older, and for which they will always need medication (I was expressly told all this) then clearly I was misdiagnosed.  I have no symptoms, take no medication, lead a full and happy life, etc.

If I was not misdiagnosed, and accept that the diagnosis of schizophrenia was the correct one, and if schizophrenia is something that you can recover from (which is the current medical opinion) then clearly I have recovered.  Because I don't have the symptoms, or the medication, etc.

But it sounds as though they (the psychiatric profession) want to leave that diagnosis hanging over my head for the rest of my life.  I am 'in remission'.  Therefore I dare not consider myself recovered, I must always be watchful of myself and forever fearful for my sanity.  I can never have a normal position in society, because I have been officially declared an outcast, a 'lunatic'.

 Leaving aside the whole question of whether schizophrenia is a valid diagnosis for anyone in the first place (because I am not articulate enough to try to challenge all that in person, although I could certainly point in the direction of a lot of very convincing literature on the subject) refusal to acknowledge recovery seems to be to be in direct contravention of the direction in the physician's Hippocratic Oath to 'Do no harm'.

I am not despairing yet.  But the GP (who was being kindly) clearly wanted me to recognise that I am unlikely to be seen by a psychiatrist for an assessment.  'These people have meetings' he said, and I wondered if he was hinting that it was a closed subject.  And then as I was leaving, tearful but struggling not to let him see it, he said something about how unusual it was for the diagnosis to be challenged.  And I understood what he was telling me - that the psychiatrists would feel that their authority was being challenged, and that they don't like that.

I didn't cry in the surgery, or when I was driving home.  I tried not to cry when I got in.  But I couldn't help it in the end - I am getting weepy again just thinking about it!  It is the frustration, the sense of powerlessness, that has done it. 

What kind of nonsense is that?  To burden somebody with a label and then refuse to speak to them about it? 

Anyway, it hasn't happened yet.  Perhaps they will see me, after all.  Surely they will see me, after all? 

I  don't know, I can only wait and see if that appointment letter plops onto the doormat.  (Toddler's passport arrived this morning by the way, hurrah!)  And if I do get an assessment then I will ask Paul to come along with me - because he is the person who knows me best - just a person, just like those psychiatrists, and he knows that I am normal, even if they refuse to acknowledge it.  Because if that meeting does take place, I am not entirely sure that it would go in my favour - if I come home from the GP and cry just because he said I might not get the meeting, maybe they are right, and I am fundamentally flawed and too weak for words.

Excapt that I know I am not.  I know I am recovered.  But I have been thinking about that famous experiment in the seventies.  I just finished reading Richard Bentall's 'Doctoring the Mind - Why Psychiatric Treatments Fail' and that reminded me of it.  Eight people (a psychologist, a psychiatrist etc...) pretended to have heard voices saying 'Thud, hollow, etc'.  Once hospitalised, although they said they were completely better, they were still detained for between 7 and 52 days each, and seven out of eight of them were given a resulting diagnosis of schizophrenia. 

In my case, obviously I was ill, but I know I am now better.  It has been many years since I had any symptoms of a serious mental illness (I have had a lot of anxiety consistently through the years, but have finally, and only very recently, managed to tackle this successfully and I feel that I am now fully healed).  However, because psychiatric diagnoses are based on observation of behaviour, I am well aware that any small oddity or weakness that I display in any meeting could (and probably will) be taken as a sign (or proof) of my madness.  I can't win!  Unless they act normally, and humanely, and see the fact that I have raised four healthy and happy children and have a successful marriage, lots of friends and a pretty average life that I greatly enjoy as an indication that I am now as medically 'sane' as the next person.  We will see.

There is one positive thing.  However all this turns out, it has given me an added incentive to crack on with my book on recovery.  I will soon have my last chapter, and a tidy end to the book one way or another.  I am going to walk the dog, and then get straight on with that.  Have a good day!


  1. Dear Louise,I so feel for you and your frustration but I do not believe that you will be able to make a psychiatrist see sense. My son's psychiatrists won't even admit that they got it all wrong and that the withdrawal from olanzapine caused his psychosis. They diagnosed him mentally ill and "mentally ill" he now is for life. It says so in his medical notes.It is totally unfair. Doctors are just fallible humans though. Just forget about them if you can and forge on with your life: you are doing a good job. You don't need a psychiatrist's validation. You know better if you are recovered or not. Trust your own judgement. I understand why you are crying though.It all is so unfair!

  2. Stopped crying now! Actually remembered the last time I was in tears was only five weeks ago (in a CBT session) the last one before that was ages though... You are probably right, there will be no getting through to them. So yes, will just get on with my life. Thanks.

    1. Crying is actually very healthy. When I was a teenager I refused to cry and it is one of the causes that led me to a breakdown at 18. I was too proud to cry. Crying is ok, that is one of the things I learned from my break down and then "pull up your socks and get on with it!"

  3. Yes, thank you, I felt better after a good cry. Just remembered the time before - when I was in hospital after having my bunions done last July... The nurse looking after me then was pleased I was crying in the middle of the night (not in a horrible way!). But crying is a sign of weakness, and I hate feeling weak, so I am determined not to give in to tears of self-pity again in a hurry.