Most people are touched by mental illness in some way and w&h hears from one reader as she talks movingly about her experience of living with schizophrenia…
Trina lives in Braintree, Essex with her husband, Ian who is a construction project manager. They have two sons, Mark and Gavin.
‘Mark was such a lovely happy little boy – there’s only 15 months between him and his brother, so we were a really close family. I don’t know if it’s good or bad that you can’t see into the future. Neither Ian or I had any knowledge of mental illness. In so many ways I wish I had because I might have recognised what was happening. When Mark became ill, we were like so many families I have since talked with – confused, frightened and increasingly desperate about the lack of help.
It’s hard to pinpoint when Mark changed, but I had a gut feeling that something wasn’t right in his teens. He became a bit of a loner and there was an incident of him being bullied at school.
When Mark was 16 I caught him smoking, and soon realised it wasn’t just tobacco. A lot more has become known about cannabis as a possible factor to triggering schizophrenia, but the link hadn’t been made then. Ian and I tackled what we thought was teenage rebellion, but over the next five years he became thin and withdrawn, and his behaviour was increasingly erratic. Certain traits started to appear – he developed a horrible curdling laugh that would interrupt a conversation at inappropriate points and go on too long. We woke in the night to the sound of him gibbering or shouting and pacing up and down. He’d write poetry or paint – but it was very dark.
Mark did get a place at art college and got himself a job as a landscape gardener at one point but he couldn’t stick at anything. Later I found he’d been sacked for talking to the plants.
Begging for help
I saw my GP repeatedly, but I was told the same thing – because Mark was now over 18 he had to make his own appointment and seek help himself. Mark, of course, thought he was perfectly well. There was no way I could persuade him to see a doctor.
Those were dark, dark times. There was a constant knot in my gut. I thought about Mark continually and cried so much. Ian and I talked about little else but we still had no idea what was wrong. I read an article about mental illness that mentioned schizophrenia. I recognised some of the behavioural traits but still didn’t know how to get help. Then I came across the charity Rethink Mental Illness, which aims to challenge negative attitudes towards mental illness. I rang their helpline. When I detailed his behaviour the man said Mark could have a serious mental illness. Their leaflets made me realise something was seriously wrong.
Our crisis point came one terrible morning. Mark rushed downstairs and ran into the garage, violently throwing himself into things, smashing his head alarmingly. We couldn’t make him stop but thankfully Gavin was there. He was always brilliant at talking to Mark and calming him down, but this time he had to restrain him physically. Mark was so frantic, Gavin had to literally sit on him.
This time our GP referred him to a pyschiatrist and meanwhile prescribed antipsychotic drugs. We had to wait ten long weeks for that appointment. Throughout that time, Mark was clearly very ill indeed, and every day we were on edge. The pyschiatrist agreed Mark DID have a serious mental illness, but said she was ‘unwilling to put people in boxes’ with a specific diagnosis.
Two weeks later, a second psychiatrist finally gave the diagnosis. Although deep down I knew what we were dealing with, when he said the word ‘schizophrenia’ I was still devastated. There was also a tiny flash of relief though to know Mark could finally get help, but it’s an awful diagnosis, and sadly there’s no cure. The years that followed were a roller coaster of different treatment plans, dreadful side effects, and Mark not taking the pills and having relapses.
People with schizophrenia suffer – I’ve seen that – but their families really suffer too. Over the years I feel guilty I neglected Gavin, who has been so supportive to Mark. The only way we can have a break is if Gavin stays at the house to keep an eye on Mark. We’ve not gone far (France was the furthest we ventured) and we’d have to phone home many times a day to check Mark was okay. Gavin is happily married and we try to keep family life as ‘normal’ as possible. We get together at Christmas and, depending on how he’s feeling, Mark may or may not join in the celebrations. Thankfully Ian has been my absolute rock. Facing it together was key because mental illness can take a terible toll on marriages too, but it has made ours stronger.
Having our son sectioned
After one particularly bad episode about ten years ago, we had to make the heartbreaking decision to have Mark sectioned. It’s a huge step, where the person is detained in a psychiatric unit, even if it’s against their own will. Mark hadn’t been sleeping, was highly agitated, consumed with paranoia. I called out Community Psychiatric Nurse (CPN), who decieved Mark into thinking he had an appointment with the psychiatrist, and we drove to the office. Ian was away, so it was just the CPN and me trying to keep Mark calm. Separately, a GP and a social worker had to agree that Mark should go to hospital, then the police came, handcuffed him and put him in the back of their car. Mark was so confused and distressed, but I wasn’t allowed to go with him – I could only follow to the hospital in my car. That was the worst day of my life. Although it was a joint decision, it will always be MY name on the form that sectioned him.
However, the 28 days Mark spent in hospital really did make a difference. His treatment plan was changed and he got a fabulous new psychiatrist who really encouraged him to be independent. In the end, we wished we’d sectioned him a dozen times earlier. He was helped to get a housing association flat about three miles away from us. If he’s unwell, he comes home and I’ll always be his primary carer, but I’m just doing what a mum does. I now volunteer with Rethink Mental Illness, the organisation that has given me so much support, running a carers’ group and art group for people like Mark – knowing I can make a difference has helped me cope.
Over the years, many of Mark’s friends have got married and he has been asked to the evening ‘do’, but this summer, one lovely friend invited him to the church service and the reception – so he saved up, bought himself a suit, and really enjoyed himself. I am so incredibly proud of him, and so hugely grateful to his friend for believing in him.
Things are finally looking up. He’s happier, he looks healthy. We have conversations and he laughs in the right places. He teases me and I laugh too. I feel Mark might just have a future now, and after all these years, I’ve finally got my son back.’
Schizophrenia – the facts
- It affects one in every 100 people.
- It usually starts between the ages of between 15 and 25 in men and 25-35 in women.
- It does not mean that sufferers are likely to be violent.
- The condition often takes the form of hallucinations, delusions, agitation, social withdrawal and bizarre behaviour.
- Sufferers may hear voices, think others are reading their mind, controlling how they think or plotting against them.
- There can be a genetic link that may or may not be triggerd by environmental factors, such as drugs, stress, infection or pre-natal trauma.
- Although there is no cure, some people recover with occasional relapses. Treatment may include antipsycotic drugs and Cognitive Behaviour Therapy.