In the beginning of November 2010 we had the chance to attend the Second World Hearing Voices Congress in Nottingham, England. We were a group of mental health professionals and voice hearers from Greece. In Nottingham we met voice hearers and individuals who have unusual ideas, and we also met their relatives and other mental health professionals. We all gathered to share our experiences and ideas, to support each other, and to organize actions to inform the public and raise awareness.
The moving personal stories were alternated with research results and statistical evidence. There was a spirit of enthusiasm and inspiration. Four hundred people attended from all continents (including the countries of Holland, Denmark, Norway, Sweden, Finland, Germany, France, Italy, Greece, Kenya, India, Japan, America, Australia and others), with a goal of supporting a movement that offers an alternative to traditional psychiatry.
Most of the speakers were voice hearers, and they talked about their personal traumata, their experiences of hospitalization, their histories of having been given pessimistic prognoses, their experiences of despair and isolation. They also spoke of their journeys toward “recovery”, the ways in which they coped with the voices and/or their unusual ideas, the ways in which they constructed an ordinary life with a minimal use of medication or no medication at all. All of them had many years of psychiatric experience and had struggled to process their traumatic experiences, to find suitable alternatives and to form a satisfying and creative life.
In their speeches the mental health professionals (mainly psychiatrists) spoke out against the diagnosis of schizophrenia, describing it as an arbitrary concept, and also spoke out against the long-term use of medication. They claimed that hearing voices and/or having unusual ideas are normal human experiences and they compared them to left-handedness. Furthermore, they referred to research supporting that the acceptance of voices and/or unusual ideas along with a form of talking therapy has the best outcomes for the quality of life of voice hearers. In addition, they pointed out the serious side effects of psychiatric drugs (for example diabetes, tardive dyskinesia and significant decrease of average life expectancy) and they argued that if medication has to be prescribed, it needs to be done in the smallest possible doses, for the shortest possible time period and in such a way that is meaningful to the interested individual.
I would like to share some of the core points from what was said during the conference: People hearing voices and/or having unusual ideas have most likely had some extremely traumatic experiences in their lives. The main emotions they experience are fear, shame and guilt. They often live controlled by the experiences of their voices and/or their unusual ideas, and are unable to explain what they are experiencing. They feel that they are not in control of their lives and quite often they become isolated. When they search for help, psychiatrists tend to give them a diagnosis and prescribe psychiatric medication. They describe the psychiatric language as simplistic and not helpful. The diagnoses are not based on objectively defined criteria, nor is there a way to verify them. Furthermore, there is no objective empirical evidence that treatment with psychiatric medication has positive outcomes.
Many individuals spoke of having accepted their diagnosis indisputably, of having felt that nobody understood them, that something strange was going on with them, and that they were marginalized. It is observed that those who did not accept the diagnosis provided, ended up better off than those who accepted the diagnosis. The side effects of the medication tremendously influence the quality of life of such people. However, the overwhelming majority accepts psychiatric drugs for life, being convinced that they have a chronic disease, similar to diabetes. They are never informed about alternative therapies and options.
The pharmaceutical companies have a huge influence over the way the public thinks, and also over how the thinking of the medical community is formed, through both advertisement and sponsored medical congresses. The average American citizen watches a mean number of ten pharmaceutical advertisements on television per day. It was revealed that each individual psychiatrist, who promotes psychiatric drugs at international congresses receives around 150.000 € annually from pharmaceutical companies. Antipsychotic medication is most commonly prescribed without a therapeutic plan and without attempts to reduce or come off the drugs. Furthermore, often two or three antipsychotics are prescribed at the same time, without the presence of empirical evidence to support such practice.
The abrupt interruption of psychiatric medication leads to serious disorders, which are similar to the initial crisis, and in so doing lead the individual to take medication once again. However, these disorders are misinterpreted as indications for an illness, not as a predictable outcome of the interruption of medication. In Denmark every second day a patient dies in psychiatric hospitals, and up till now the causes of their deaths have not been investigated. However, in October 2010 in Denmark, thirteen million Danish Crowns were approved in order to examine the causes of deaths in psychiatric institutions.
Psychiatric patients are considered dangerous people and are not treated as fellow human beings. People hearing voices and/or having unusual ideas have the need to talk and to be heard, they need somebody to believe in them, they need to have hope in something different and to discover alternative options. Therapy does not necessarily consist in getting rid of the voices and/or unusual ideas, rather in understanding the meaning of them in relation to the individual’s experiences, so that the voices/unusual ideas become harmless or helpful (for instance, as messengers of needs).
Voice hearing and/or having unusual ideas is a survival strategy: voices or unusual ideas may be indications of problems in the past or the present, and they may have metaphorical meanings, represent unbearable and split feelings, even hide important messages. Denying one’s traumatic experience (i.e. abuse in childhood) is not helpful. In contrast, talking about such experiences acts therapeutically. In the process towards having a normal life (away from hospitalization and psychiatric drugs) it is important for the interested individual to feel safe and accepted, to be informed, to cooperate with others, to reflect on the changes that he or she wants in his or her life, to take responsibility for those changes, to appreciate and be happy with every little step, to hope, and of course to accept that things are not always going to be nice.
“Recovery” is an active process. Voice hearers or people with unusual ideas are themselves experts in their own experiences. They are the ones who are slowly going to gain back control over their lives. The surrounding environment can support a person by maintaining hope when the individual is in despair. In self-help groups people hearing voices and/or having unusual ideas come out of their isolation and discuss their experiences and their coping strategies with other people who have similar concerns. In many instances these groups act in a therapeutic way.
Intervoice is a movement and an organization that acts as an umbrella for all the self-help groups of voice hearers around the world. The vision of the movement is to have a network for people hearing voices and/or having unusual ideas in every country. They aim to inform parents and young people about the options that are available when children or young individuals hear voices and/or have unusual ideas. Maybe through this chronic medication and hospitalization can be avoided. Additionally, Intervoice is mobilized to inform and raise the public’s awareness in regards to abuse (not just sexual) in childhood, as childhood abuse is associated with hearing voices and having unusual ideas.
In conclusion, the conference was organized perfectly by Peter Bullimore and Jacqui Dillon. Words touched both mind and heart and most importantly they inspired… We left the conference with many ideas and excitement for the self help-groups that run in Thessaloniki and Athens. We also left with a mission: to develop and expand the network in Greece and organize an international conference in our country in the following years!
In April 2011 a Dutch psychiatry professor, Dr Marius Romme, along with his wife and partner Sandra Escher, both of whom initiated the Hearing Voices movement, visited Greece and talked to us about their work!
More information: www.intervoiceonline.org
Phone number for the self-help group in Thessaloniki: 6938 097850
Phone numbers for the self-help groups in Athens: 6944 302577 / 6956 879974