Elin Jones describes how a family tragedy led to her involvement with Hafal
On 26 May this year, my husband Gwyn and I would have celebrated thirty years of marriage. In 1990, as we approached our tenth wedding anniversary, we could look forward confidently to many more years together. We had been together for fifteen years and loved each other dearly. We shared a busy and happy life with a wide circle of friends and interests. We were both teachers who enjoyed ourwork. We lived in a pretty village just outside Cardiff, and had another holiday home in west Wales, where Gwyn kept his sailing boat (he would want you to know it was a Macwester 27). Life was good.
Four years later, Gwyn had committed suicide and I was a widow, overwhelmed by grief. What had happened? A serious mental illness, probably schizophrenia, had put a sledgehammer through our life together.
Gwyn had had a serious mental breakdown years before we met, but had recovered his health. For some reason – probably pressure of work, and the insecurities of teaching in those years – he began to suffer another. I could see the changes in him. My cheerful, energetic, easy-going husband became irritable, withdrawn, suspicious and bad-tempered. But I had no idea of the reasons for this, nor of what was happening to him, nor of how to help him get better.
For four terrible years we struggled together to overcome the illness. Since our doctor was unwilling to give me any indication of the reasons for the changes in Gwyn’s personality, I found myself desperately reading books on psychology in our local library. I was often ashamed of his behaviour, and reluctant to discuss him with our friends and families. Our neighbours began to complain about him, and eventually we had to move house. I will spare you the horrible details of the years that followed, the appalling effects of the medication used then, the ineffectual and inefficient treatment we received. The outcome was a body in a morgue in Carmarthen, and a policeman knocking on a door in Cardiff.
During these years I received help from an organisation then called the National Schizophrenia Fellowship (NSF). Since Gwyn was unable to recognize that he was mentally ill it was very difficult to discuss his problems with him, but part of his illness was a terrible restlessness, and he was often away from home. When I could, I talked to the NSF, the only people who seemed to understand, and found their practical advice and reassurance almost my only support and comfort.
After Gwyn’s death the NSF continued to support me, and helped me to pursue a complaint against Whitchurch Hospital, which eventually resulted in an apology from a consultant there.
I found I could no longer work, took early retirement from my post in the Education Service of National Museum Wales, and looked for part-time work. I also began to work as a volunteer with the NSF. It was still good to talk with people who understood, who had shared similar terrible experiences and survived. Eventually I became a member of the NSF’s Board of Trustees, and then, when it became Hafal (Equal), an independent charity in Wales, Vice-Chair of its Board of Trustees. In 2009 I became Chair of Hafal.
During these years I have seen – and been part of – the growth of Hafal’s work across Wales. I have met many people who have had experiences similar to Gwyn’s and to mine, and have been helped to understand and to cope with their problems through Hafal’s range of support and advice services. I have visited projects where people with severe mental illness work with staff and volunteers to gain an understanding of their illness, and to take the small steps which can lead to recovery. I have attended conferences where members of the medical and social work professions listen to presentations from people with serious mental illness who are also experts in the field.
Over these years I have seen some improvements in medication and the use of talking therapies, and heard many promises of improvement from those medical and social care professionals who are employed to diagnose, treat and help – but I have also heard stories similar to Gwyn’s, and to mine. Some of these have had better outcomes, but all too often people are still experiencing the same difficulties we experienced twenty years ago.
I still grieve for my husband, and grieve too for all those people, who, as you read this, will be struggling not only with a terrible illness, but with their own ignorance of the illness and its treatment, their fear of themselves or the people they love, and with society’s scorn and prejudice against mental illness.
I would urge everyone in these dreadful circumstances to contact Hafal. Our staff will always do their best keep their Hafal promise of help, and you will know you are not alone. We cannot always make things better, because these are serious illnesses and difficult to treat. However, we can work with you to help you drive your own recovery forward, and to understand and cope with your own circumstances.