When a loved one's mental wellbeing breaks down, families suffer hugely often before diagnosis, writes MICHELLE McDONAGH
COPING WITH a severe mental illness such as schizophrenia affects not only the individual involved, but every member of their family. As well as watching their loved one’s mental wellbeing break down before their eyes, the parents, spouse and siblings of a person with schizophrenia have to deal with the stigma that still surrounds serious mental illness.
Director of Shine (formerly Schizophrenia Ireland) John Saunders points out that an illness such as schizophrenia is as traumatic for the family as any serious medical or physical illness.
“There is the obvious direct effect of seeing a dramatic change in a loved one’s behaviour due to their illness and contact with the mental health services, which is all very traumatic. On top of this, we live in a society where mental ill health is still a stigmatised subject. It’s still an issue that’s not explored or acknowledged fully, so family members are not only dealing with somebody having mental illness in the family, but with the stigma as well.”
Marie (not her real name) says she will never forget the first day she went to visit her son at the Central Mental Hospital in Dundrum, the terrible sense of shame and fear she felt standing at the gates on the footpath outside ringing the bell.
What upsets Marie more than anything is the thought that if her son had got help on time, he may not have ended up in the country’s national forensic psychiatric hospital where he has spent the past eight years.
To have a child affected by severe mental illness is very difficult for any mother to have to cope with, but Marie’s situation is particularly heart-breaking. Her two sons were diagnosed with schizophrenia after undergoing major nervous breakdowns at different stages in their lives.
“Before the boys got sick, I was very prejudiced against people with severe mental illness, especially if somebody else had suffered because of them and it took me a while to get over this. I thought they should be locked up and the key thrown away, but I realise now that many of those in Dundrum are people who did not get the help they needed, not criminals,” she says.
Marie always felt there was something different about her younger son, Sean, even from a very young age. He walked and talked very young, was highly intelligent and artistic, but his mind seemed to be always racing. His teenage years were very difficult and he was on a downward spiral from his late teens, drinking excessively and smoking cannabis. He became increasingly paranoid and his behaviour became more and more self-destructive.
“He was tortured really, he was terrified of everything. He would lock himself into his bedroom with his bed against the door, he never felt safe. He heard voices from the TV although he didn’t tell us this at the time and he even used to think I was going to poison him,” she recalls
Although Marie says she and Sean’s father did their best to try and get help for their son from GPs, all they were offered was a prescription for antidepressants. Sean was eventually diagnosed with schizophrenia in his early 20s after a nervous breakdown and was admitted to a psychiatric hospital for the first time.
“It was a relief and a shock when he was diagnosed. There was the relief that maybe there was something somebody could do to help him at last, and the shock that our son had a severe mental illness. Even the word schizophrenia frightened me. Like a lot of people who do not know about the disease, they associate it with violent behaviour or the worst that can happen to somebody.”
It wasn’t until Sean was admitted to Dundrum eight years ago that his mother feels he finally started to get the help he needed. Back then, she thought her son would be out again in less than a year, but his illness has proved resistant to medication and now in his mid 30s, he is still there.
While Marie has huge praise for most of the staff at Dundrum, who have become “like a family”, and for clinical director, Prof Harry Kennedy, she agrees that the building does not lend itself to a lot of respect and dignity for patients and is a frightening place at first for both patients and their families.
For the past eight years, she has been able to converse with her son only in a large noisy dining hall surrounded by other patients and their families with no privacy for anybody. At one stage, she was visiting her two sons in Dundrum at the same time.
Her older son, Andrew, showed no signs of distress when he was younger, but he became ill in his late 20s and was also diagnosed with schizophrenia after a major breakdown. He spent four years in Dundrum and is now living independently and involved in voluntary work with people affected by mental illness.
Marie feels very strongly about the need to educate the next generation of young people to try and reduce the fear and stigma around severe mental illness.
“There are so many people in Ireland with severe mental illness, but there’s such fear around it that it’s not talked about. All of the awareness advetising campaigns tend to focus on depression, but do not make people aware of the symptoms of the most severe mental illnesses like paranoid schizophrenia. This is a young person’s illness and young men in particular feel ashamed and alone and are not seeking help.”
Marie also highlights the need to treat schizophrenia and psychosis “as an illness, not a crime” and for better facilities and services so that young people in Ireland with severe mental health problems will get the help they so desperately need before it’s too late.
Although the experience of having two sons with serious mental illness has been “horrendous” for Marie and her family, she still tries to look on the bright side of life. There is great support from the staff at Dundrum, the Dundrum carers’ group and from Shine, the organisation supporting people affected by mental illness in Ireland, she points out. “Eight years on, I still find it hard walking away from my son after a visit and leaving him in Dundrum, but it’s not all sadness either. You just get that you manage it.”
John Saunders points out that most of the time, the person with schizophrenia is not in hospital but being cared for at home by a family member, usually a parent or a spouse, and he says the State needs to recognise the primary role that these carers play in trying to manage serious mental illness.
“Recovery can be aided by good family support, intervention and skills training for family members. The mental health services, rightly so, focus on the needs of the individual who is ill, but they do not take into account the needs of family members who can sometimes feel excluded in the doctor/patient relationship,” he says.
“We argue that good mental healthcare should involve the family as well as the individual with the illness and healthcare professionals, as happens in the case of many physical illnesses. This same model should be applied in mental healthcare so that recovery becomes an achievable and realistic goal.”
Consultant psychiatrist at St Patrick’s University Hospital, Prof Paul Fearon, is regarded as an expert in the field of schizophrenia. When he returned to Ireland in 2008 after working in London for many years, he was struck by the level of ignorance and stigma that still surrounds mental illness in this country, although he sees things beginning to slowly improve.
Fearon is keen to dispel some of the many common misconceptions that surround schizophrenia. For instance, he explains that contrary to public perception, there is actually only a modest increase in the risk of violence among people with schizophrenia compared to the general population.
“People’s impression of schizophrenia is of an incurable disease involving things inexorably going downhill and indeed, 20 years ago, it was largely an incurable disease which had at best a steady course or in many cases, a downward course without any period of recovery,” he says.
“Although it is still a serious mental illness, there has been a huge improvement in terms of treatment and practical rehabilitation.”
Shine (formerly Schizophrenia Ireland) is the national organisation dedicated to upholding the rights and addressing the needs of all those affected by enduring mental illness including schizophrenia and bipolar disorder. See shine online.ie or call the helpline at 1890-621631, 9am-4pm daily.
Schizophrenia. What is it?
Schizophrenia is a serious mental illness characterised by disturbances in a person's thoughts, perceptions, emotions and behaviour.
It affects approximately one in every 100 people in Ireland at some point in their lives and first onset commonly occurs in adolescence or early adulthood, although it can also occur later in life.
Men are about one and a half times more likely than women to develop schizophrenia.
In the early stages of illness, the person with schizophrenia may become slowly more withdrawn and introverted and lose their drive and motivation for life – these are known as "negative symptoms".
During severe spells, they may suffer from delusions and hallucinations, which are known as "positive symptoms".
