For the first 37 years of my life I suffered in silence. Emerging from a dysfunctional childhood and adolescent depression I moved into adulthood only to be come ensnared in a violent marriage which brought me to the brink of insanity. Only by walking away did I postpone for 6 years what was to be a highly terrifying descent into psychosis, a six month stay in hospital, culminating in 6 horrendous treatments of Electro Convulsive Therapy (ECT). During the next 6 years I stumbled in the darkness of my soul and insult was added to injury when 10 years after my psychotic breakdown, I was diagnosed with cataracts in both eyes, caused by the ingestion of enormous quantities of neuroleptic drugs. I faced surgery twice and recovery from the second operation was both slow and painful. Seven years after my breakdown I’d given up the cocktail of medication. Withdrawal was far from easy and since 1993 I’ve relapsed on six occasions. I call that recovery. Others do not. Through talking therapies and cathartic writing I have broken my silence and found my voice. No one could hear my headaches or see my optical migraines. Now I know it is my responsibility and mine alone, to ensure that my mental well being remains constant and continual. By nurturing my psyche with good music, good nutrition and company of positive people – and by avoiding negativity as far as I can -I can achieve good health. I understand that the vagus nerve responds well to this regime and blood pressure and heart rate are attuned accordingly. More and more of us are now acknowledging the link between early life trauma and adult psychosis and the move towards demedicalisation of mental illness is gathering pace. Talking about distress and verbalising my pain has helped me process and absorb traumatic events and see, that once delusions and hallucinations have dissipated, the pain is unprotected – and hurts intensely. Without the cloak of madness I am vulnerable and raw, exposed and stinging. Healing comes when crying and talking clear and clean my psyche and allow new and happier memories to replace the wounds with genuine emotional growth – and understanding that it is a sign of strength, not weakness, that I survived those traumatic times and can now move forward, without looking over my shoulder.
It comes to something when a patient is asked to pay a General Practitioner to write a letter to the Department of Work and Pensions. A General Practitioner is surely there to oversee the mental wellbeing of a patient? Shouldn’t a standard letter, sent on behalf of a patient, to the DWP, or indeed any part of HMG, be sent by electronic mail, or by Royal Mail, for the cost of second class stamp? I’ve reluctantly agreed to pay £16.50 so that my GP can convey some information on my behalf. Once again, I shall think very carefully about approaching a General Practitioner for any help in relation to any aspect of my mental well being.
On Thursday, 21st March 2013, from 10.30 am -1.00 pm at the Friends Meeting House, St John’s Street, Bury St Edmunds, Suffolk IP33 1SJ this workshop aims to explore the experience of this diagnosis, the things people would like help with, looking at what that help might be.
Telephone 01473 329316
My Secret Past
The aim of the documentary is to bring personal issues with mental health out into the open to help people realise that it is something which people do have difficulty with, and that it doesn’t have to be something we can’t talk about openly. This is to be a sensitive documentary aiming to capture the realities faced by mental health service users, in order to help raise awareness of these important issues. Jon and Nicolette who are working on the programme are really keen to speak to anyone who may be interested in taking part in the programme by sharing their experiences with mental health.
Whatever your background and history of mental illness, if you feel able to take part Jon and Nicolette would really like to hear from you.
call 07802 604756.
‘Schizophrenia’: Time to Discard the Diagnosis?
Preliminary findings from the independent Inquiry into the ‘Schizophrenia’ Label (ISL) finds that over 80% of those who gave evidence believe the diagnosis is damaging and dangerous.
“The label has destroyed my life, friendships, relationships and employment prospects.” [Survey respondent]
“The doctor at the hospital kept asking me if I heard voices. I didn’t know what she meant by this. Was she checking my hearing, my awareness? Was she using a metaphor? I didn’t know. I said yes as I could hear the voices of nurses and patients on the ward down the corridor. That sealed my fate.” [Testimony submission]
“When [my son] found that some people recovered he was adamant that he would be one of these and this has helped him to fight for services he needs and to maintain good self-awareness. Therefore largely the label has not been unhelpful — but very very scary.” [Survey respondent]
The independent Inquiry into the ‘Schizophrenia’ Label (ISL) was launched in April to investigate the usefulness of ‘schizophrenia’ as a diagnosis and medical condition, and the impact this diagnosis has on people’s lives. Since the launch, the Inquiry received evidence from around 500 people in the form of responses to an online survey, testimony submissions via the Inquiry website, comments on Facebook, a focus group in Manchester, and other submissions in the form of articles, personal narratives and memoirs.
The coordinating group and the independent panel are currently collating and examining the evidence. Preliminary results from our survey show that:
- The majority of respondents feel that a diagnosis of ‘schizophrenia’ is damaging: Over 80% of the respondents said that the diagnosis of ‘schizophrenia’ makes life more difficult for people diagnosed; 88% think that ‘schizophrenia’ is associated in the minds of the public with violence against others despite evidence to the contrary.
- 50% thought that they would be treated more harshly by the criminal justice system.
- 60% of respondents believe that ‘race’ and ethnicity affect the diagnosis of schizophrenia, for a range of reasons including impact of social class, racism and cultural assumptions.
- Well over half (57%) of the respondents do not see ‘schizophrenia’ as a medical illness and do not think that there is enough scientific evidence to underpin the diagnosis.
- 49% think that medication should be given only if a service user requests this.
- 46% think that the diagnosis of schizophrenia should never be used by professionals in case notes or discussion, with the majority of these arguing that people’s own words for their condition or problems should be used.
- Alternatives to diagnosis include working with people’s narratives as the basis for support and using techniques developed based on this concept such as those promoted by the Hearing Voices movement and the Finnish Open Dialogue project.
The recent report from the Schizophrenia Commission, headed by the mental health charity Rethink and the Psychosis Research Unit at the Institute of Psychiatry has made 42 recommendations to change the way people diagnosed with schizophrenia are treated. However, our preliminary findings show that the diagnosis itself and its usefulness and validity are under question and may need discarding completely. The initial reading of the evidence submitted to ISL shows that there is no consensus in how we should understand our own and other people’s distress and its manifestations, and that it is time to move away from psychiatric diagnoses and support people as fellow human beings rather than as people with a medical illness.
“I know that I experience some kind of ‘altered stage’ and I wish I could find non-medical language to talk about my experience without having to recite a whole chapter of my life…” [Testimony submission]
“I am in favour of formulating a co-constructed narrative of the service user’s problems and their personal meaning in the context of their life experiences. No diagnosis needed!” [Survey respondent]
ISL, supported by over 40 organisations and 250 individuals, has been run on a fully voluntary basis with no external funding. The Inquiry will report fully in the New Year. For more information and to read the testimonies, please visit www.schizophreniainquiry.org.
The coordinating group
Jonathan Mill and colleagues at the Institute of Psychiatry, King’s College, London have scanned the genome of 22 pairs of identical twins. The twins were chosen because one twin in each pair was diagnosed with Schizophrenia or Bipolar Disorder.
The findings produce the strongest evidence yet that gene changes caused by their environment might cause the conditions
The twins had identical DNA. But they showed significant differences in chemical “epigenetic” markings. These are changes that do not alter the sequence of DNA but leave chemical marks on genes that dictate how active they are. These changes were on genes that have been linked with Bipolar Disorder and Schizophrenia.
Mill’s team scanned for differences in the attachment of chemical methyl groups at 27,000 sites in the genome. Genes are normally switched off by Methylation and De-Methylation turns them on.
Regardless of which condition the twin had, the most significant differences,with variations of up to 20% in the amount of Methylation, were in the promoter “switch” for a gene called ST6GALNAC1, which has been linked with Schizophrenia . The function of this gene is not yet fully known but it is thought to add sugars to proteins which could alter the speed or specificity of their usual function
The findings have tallied with another study which involved the screening of post- mortem brain tissue from people who had some form of psychosis. Here the researchers found differences of up to 25% in methylation of the same gene, compared with controls
The twin scans also showed methylation differences in GPR24 a gene previously linked to Bipolar Disorder. One gene called ZNF659 showed over- methylation in people with Schizophrenia and under- methylation in those were were Bipolar. This suggests that the conditions might result from opposing gene activity. (Human Molecular Genetics DOI:10.19098/hmg/ddr416)
Jonathan Mill says “We know these disorders are related, and there are clinical features shared by both. But our scan suggests there are some genes that might be overactive in one disease and underactive in the other.”
Mill says that twins would need to be scanned regularly through life to find out whether epigenetic changes precede the onset of the disorders. Maybe then the alterations could be linked to environmental changes like stressful events or diet, which have been shown to cause inheritable epigenetic changes in mice.
The human studies support the hypothesis that epigenetic mechanisms may drive psychiatric disorders. I think the environment we live in and trauma we endure are key factors in the onset of conditions such as Schizophrenia and Bipolar Disorder and it is certainly well documented that trauma in childhood is a key risk factor for psychosis. I ask the Government to invest more money in mental health research. The current level of 6.5% is simply too low. We should be looking to protect our children and also to widen our understanding of the role of epigenetics in mental health.