Personal experiences

As a young man I was prey to a range of psychotic symptoms: a menacing voice, misinterpretation of sounds and strange ideas which often unnervingly arrived as ready-made poems about death. I believe that these experiences represented the culmination of years of acute loneliness, unresolved issues, personal choices, a fervent imagination and were linked to the onset of puberty and the ‘promise’ of the swinging sixties. I systematically became isolated and emotionally bankrupt, surrounded by fearfulness and a deep sense of mockery. I could find no positive identity(s) or social role(s). Psychosis, in my case, was very much nurtured by an abusive level of alcohol, tobacco and cannabis consumption.

Finding it increasingly difficult to just keep going I reluctantly sought psychiatric help. Encouraged by a warm welcome I was led into a lecture room full of medical students and asked if I minded if they sat in on my assessment. I was diagnosed with ‘Pathological Shyness’ and prescribed Librium. I took the Librium once and never went back. At home in my medical family there were mutterings of schizophrenia.

A turning point was meeting my life-partner Fran. Fast forward four years and Fran experiences post-puerperal psychosis. I was advised she needed to be admitted to Our Lady’s Hospital, a foreboding building on the outskirts of Ennis. I refused but that night realised we could not cope with the terror gripping Fran who was banging her head against the walls, pulling out her hair and screaming a scream that seemed to contain all the pain ever experienced in the world.

It was a huge relief to be met in the hospital by friendly nurses who spoke with kindness and the message that everything would be alright. Over the next three years Fran received a series of diagnoses: schizophrenia, schizoaffective disorder and bipolar disorder. She was prescribed an ever-growing cocktail of drugs (18 tablets a day) and several series of electroconvulsive therapy (ECT). Her treatment sometimes included solitary confinement in one of the long-term locked wards. There was never any talk of recovery or questions about trauma or indeed what Fran might find helpful. Life became more and more difficult. We now had three small children as well as running a working farm. I had stopped smoking cannabis and using alcohol but was still extremely socially incompetent and a chain smoker. Ironically, I felt I was seen as ‘well’ by mental health professionals. We were both very aware that one of Fran’s sisters had been diagnosed with schizophrenia and had been homeless for years. This sister died at 51 in a Salvation Army hostel in Amsterdam.

The next turning point was discovering Grow. Grow was a place of hope, empowerment and inspiration. I felt instantly at home and somehow ‘knew’ we could both recover with the support of this community. My own recovery began with gradually learning to manage my shyness and paranoia through involvements with neighbours, creative arts, a return to study (BA, MPsychSc, PhD), physical activities and Toast Masters (a public speaking organisation). Progress was slow and there were many setbacks. Particularly helpful were a course in metaphysics which answered some of my questions about why I had been born and why pain exists and a period working in a factory where the camaraderie was palpable.

After 15 years, Fran was able to wean herself completely off medication with the support of her psychiatrist and officially left the mental health system. Her recovery included, time spent in church, third level study, Community Employment Schemes, back to work courses and work within the third order of the Franciscans.

In 1983 I began work for Grow and later became National Programme Coordinator. Over 30 years, I attended thousands of groups witnessing the recovery of a multitude of people many of whom successfully left medication behind even though their diagnoses were supposedly for life. I was also one of two people with lived experience to serve on Ireland’s first Mental Health Commission.

Our world was shattered in 2021 when a very close relative, aged 45, was hospitalised and diagnosed with schizophrenia. He was extremely heavily medicated and given a disability pension. As far as we know, he was not encouraged to avail of any of the many psychosocial supports that can help in recovery (Hearing Voices Network, recovery college etc.). Nothing appeared to have changed. As close relatives we found it extremely difficult to obtain any information. This person’s experience show’s how, despite many very positive developments such as the employment of peer support workers, the creation of recovery colleges and the publication of documents such as Sharing the Vision it is still very possible to fall through the cracks and miss out on recovery oriented help.

The mutual peer support of Grow

Grow began in Australia in 1957, coming to Ireland in 1969. It evolved through the reflective lived experience of its members. Key to its success was Con Keogh a priest and epistemologist who had spent 11 years studying in Europe. Con later experienced a spectacular breakdown, was hospitalised and diagnosed with paranoid schizophrenia. In hospital he received many rounds of ECT without anaesthetic or anti-convulsants. He described hospital as ‘a regime of terror’ (Grow, 1979). He was one of the first people to be given chlorpromazine. On discharge, Con joined Alcoholics Anonymous although he had no alcohol addiction. Here he met others whose primary need was to recover from various diagnoses of mental illness. They gained permission to adapt Alcoholics Anonymous’s 12 steps.

This pioneering group held two meetings each week. At the first they discussed their needs and problems and suggested possible solutions. The second, a leaders meeting, involved reflecting on how effective different strategies had been. Here, Con began recording, honing and refining a steadily growing book of recovery principles which came to be known as The Program Book (Grow, 2013). This book focused on understanding and working towards mental health rather than trying to understand and treat mental illness. One of its truisms is ‘mental health cannot be taught it has to be learned together’.

Grow meetings follow a specific agenda and are led by group members. They begin with a short reflection, reading the 12 steps and a commitment to confidentiality. Next, one person will give a testimony of recovery and growth. Then come reports on progress made in the previous week. The ‘middle routine’ is educational, studying an article on some aspect of recovery. Finally, each person sets a goal for the coming week and takes on a ‘practical task’. This task may involve seeking professional help in areas outside the expertise of the Grow group (e.g. Wellness Recovery Action Plan (WRAP) a recovery-based course designed by Mary Copeland training, or attending the Rape Crisis Centre, or engaging with a counsellor, psychologist, or psychiatrist). The meetings end with announcements about a range of events both, within and outside of Grow that may help recovery.

Possibly Grow’s biggest strength is its community. People get to know each other in a unique and empowering way. They hear other people’s stories and learn how to tell their own. In the group, you are seen and treated as someone of unique value, with practical wisdom, experience, gifts and leadership qualities. You are ‘called forth’ (Evely, Reference Evely1964) to recovery.

Embarking on a narrative study of recovery through Grow

My doctoral study aimed to reveal common processes of recovery connected to the Grow experience. My first ethical approval application was rejected. I was requested to describe my study’s participants as particularly vulnerable and to tick a box describing each as mentally ill. I argued why such a classification would be the antithesis of the recovery philosophy. If you describe yourself as recovered from mental illness you are no longer mentally ill nor are you particularly vulnerable. This was met with a terse communication. Ethics Committees are not ‘forums for discussion’. This authoritarian reaction while perhaps typifying current dominant medical thinking, goes against a more progressive approach to ethics which rejects ‘professional paternalism’ and suggests a ‘collaborative partnership approach’ (Emmanuel & Grady Reference Emmanuel and Grady2006).

My research involved conducting one-to-one interviews around how Grow helped in the recovery process. I interviewed 12 men and 14 women with a diagnosis of a mental illness, who had been prescribed medication and/or been hospitalised, had taken on leadership roles in and a minimum of 3 years membership of Grow, and considered themselves to have recovered. I used a narrative methodology and conducted a thematic analysis using Braun and Clarke’s (Reference Braun and Clarke2006) guidelines.

Discussion: what might a recovery oriented system look like?

I would like to now share my own perspective on how we might create a more recovery oriented and empowering mental health system where lived experience is seen as a valid and invaluable source of knowledge. At its heart would be a questioning of the nature and meaning of mental illness and a subsequent radical change in language and practice.

At a theoretical level

At a practical level

Mental health professional training generating mental health, normalising mental illness and valuing lived experience

Currently psychiatric training appears to still focus on discovering a primary medical cause of mental illness. (Kupfer, Reference Kupfer2013) There seems to be little interest in how and why a growing number of people have exited the mental health system and left medication behind. There appears to be little focus on what causes or generates mental health. Concentrating on what nurtures or generates mental health rather than what causes mental illness might legitimately broaden the scope of psychiatry in a very positive way. If our physiology and neural pathways are key factors in the onset of mental illness then what activities naturally stimulate these when we are healthy and how do the different levels in which we live influence each other.

Doctors across the world reportedly have extremely high levels of stress related mental health challenges, suicide levels and alcohol dependency and also tend to avoid seeking professional help due to stigma and fear of losing social and professional status (Ventriglio et al. Reference Ventriglio, Watson and Bhugra2020). A study of medical students (Al-Shahrani et al. Reference Al-Shahrani, Alasmri, Al-Shahrani, Al-Moalwi, Al Qahtani and Siddiqui2023) indicated extreme levels of stress experienced by up to 90% of students who face a multitude of mental health challenges. They would appear to be a group that could hugely benefit from and add to our knowledge about the role and value of peer support and lived experience in recovery and in maintaining mental health. Would it not be possible to create mutual peer support groups using the Grow model or other forms for all students preparing to work within mental health.

All mental health professionals should have to study the value of lived experience in recovery and show they are familiar with the work of at least some good examples of non-medical recovery such as Hearing Voices Network, Grow, Open Dialogue, Mind Matters, etc.

At a policy level