Ella's story

"I was asked if I, as a previous Trustee of Making Space, would like to share some of my experiences in order to reduce stigma in mental illness. Here is my story....

My husband and I had 3 children, a boy and 2 girls. When our son was 22 years old, he was diagnosed with schizophrenia after suffering depression and long periods of withdrawal. He initially stayed for 3 months as an informal patient at the psychiatric unit where he was given treatment, including depot injections. We were relieved that he was receiving help and we hoped that perhaps he would return to his normally happy and optimistic frame of mind and that perhaps this was a one- off episode of mental illness.

Our lives had been turned upside down and we spent every day visiting him and sitting in the ward where nothing very much seemed to be happening. This became part of the ritual of our life and we gradually became acquainted with the other patients. I felt very sorry for one young man who constantly paced up and down the ward. Little did I realise that our paths would cross a few years later.

Our son was discharged and we were left to our own devices – no social worker, no counselling and no one to talk to about our experiences. There was, fortunately, a Day Hospital which he could and did attend conscientiously twice a week. It became apparent after several changes of medication, that he was treatment resistant. 3 years later and after a long grey period when we tried to normalise our lives, our son was still at home and not much better. I worked in a Jobcentre, helping people to find work and at this time I was asked to attend a 6 week residential  training course to  be a disability employment adviser. There were 12 of us on the course and it was held in Liverpool and Manchester.

My husband was working and keeping an eye on our son and everybody else whilst I was away. I found the experience exhilarating but I can’t understand why I did not tell any of my friends on the course that my son was suffering from schizophrenia. They would have been supportive and my experience would have been helpful. Maybe my silence was because there was no improvement in our son’s condition and just to speak about it would have upset me. Stigma did not enter into it. We had a one day module on severe mental illness which I dreaded, probably because it was too near the nerve for me. The lecturer was a psychiatrist, a charismatic man who obviously loved his job. I have never forgotten what he said… “Whenever I walk around the wards and see mainly young men, whose lives have been devastated by mental illness, I feel so sad.”

Just when you think that nothing will ever get better, something did. Our son was still attending the Day Hospital when his Psychiatrist asked me to see her. She recommended putting him onto a new drug, Clozaril, which was mainly for treatment resistant patients. From day one he gradually began to improve. He was referred to The Rock, an organisation I loved and knew well. It was started by a Methodist Minister for the relief and support of carers and service users. I presume that the name came from a Bible reference. Our son joined and did a full time course and continued in a voluntary capacity for some years.

One day a social worker phoned and asked if I could see one of his clients who had been very ill for many years. He had been prescribed a new drug and the transformation had been amazing. I immediately recognised him as being the patient who had walked ceaselessly around the wards during our son’s time in the psychiatric unit. Here sat a pleasant although rather nervous man who needed help and support in getting back into the community and possibly find work. After lots of discussion I knew exactly where to send him. He started at the Rock and eventually did some part time gardening work.

And what have I learned from this journey?  Our lives seem to have been divided into a “before and after” our son’s illness. We have been changed but we have a better understanding of the problems faced by people living with mental illness. My eldest daughter worked for one organisation for 10 years and told her work colleagues on her last day that her brother had schizophrenia. Now she feels comfortable with telling anyone about it and thinks that social media has helped to fight stigma. My youngest daughter is also very open about her brother’s illness. So things are improving. And would I reveal my son’s condition? I would probably say that he had enduring mental illness unless I knew the person very well to whom I was speaking.

The update? The Rock became a victim of the economic downturn and was closed 4 years ago. The man that I referred to the Rock settled in well and gained experience in gardening. When I followed his progress I was told that sadly he had died. Our son is much better and although still receiving treatment now lives in his own house nearby. So many factors have contributed to his well being – family support, help from Making Space, the interest from doctors, new treatments and the care of social workers. If we are to beat stigma we must try to communicate to as many people as possible that with the right support it is possible to live well and have a mental illness."