Recovery - what it means to me

Abstract

I have been working as a mental health user consultant for many years. Words have changed over time or in fact words have remained the same and the way they are interpreted changes. My diagnosis has changed from Manic Depression to Bipolar Disorder but my condition remains the same. A psychiatric labelling system is still in place and nobody asked me how I thought it applied to me. It suits the mental health system to give me a label and I know people are keen to know what is „wrong“ with them but as a wise unknown person said „labels are for parcels not people“. When I was first labelled in 1978 I was a patient in an asylum. This hospital looked like a prison with high walls with barbed wire on top apparently to keep us safe inside. The word asylum had changed from sanctuary, place of refuge to place of compulsory treatment. There was no care in the community that came later and now has become community treatment. I am from England, this is a UK view but similar tales can be told by users and survivors from all over Europe. Survivor is a contentious word when linked to mental health services. Survivor makes mental health workers uncomfortable as it implies we have survived mental health services which were uncaring, unkind and incompetent. This may be true but often is not and means in my view that we should be congratulated in having user mental health services and survived the experience both positive and negative. This demonstrates how words which were welcomed by the user/survivor movement as getting away from being a victim of your illness to having hope for the future by giving the prospect of recovery which did not seem to be there in services. However, our notion of recovery which gave us hope is now used to say „you are recovered“, „you do not need services to help keep you well“. I have been involved in developing a truth and reconciliation process to enable mental health services and mental health users/survivors to acknowledge the wrongs done in the name of psychiatric treatment. The opening statement sets out our view that „Recovery“ is no longer a service user led agenda. We feel that the term in the UK and other countries is becoming almost meaningless. As most health and social care services in England follow a recovery agenda, „Recovery“ has become equated with loss of services, loss of benefits and a push towards returning to work without the support, retraining and flexibility this would require. More Information at: Truth and Reconciliation in Psychiatry (TRIP) http://www.recoveryin-sight.com/the-capabilities-approach-a-draft-request-for-an-apology-comments-welcomed/ Some user/survivors are delighted to be considered recovered and are happy to be left to get on with life. However, they are not likely to have left their mental illness label behind. How many people are considered to be recovered and have a certificate from mental health services to say they no longer have a mental illness? One could say there is not a cure and therefore recovery is actually remission. I think this would be a more honest word to use together with an estimate of likelihood of relapse. This may bring us in to line with physical health services and this false divide between physical and mental health may start to mean a more holistic service for all citizens. Hopefully this debate on terminology and what it means will permeate the ENMESH conference. I hope there will be a dialogue which means users/survivors can work together to devise research which answers these questions and produces outcomes which are relevant to individual citizens’ not just collective groups of symptoms. I look forward to contributing to this discussion by summing up what the recovery stream has said. Hopefully together we can devise an action plan to take this debate forward. Keywords: European Network of Users and Survivors in Psychiatry (ENUSP), labelling, Truth and Reconciliation in Psychiatry (TRIP).