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'There is a stigma with schizophrenia - I live in fear all the time'

Amy McGrath was just 19 when she was diagnosed with the mental illness. In advance of World Mental Health day this Saturday, the teacher and mum-of-one (39) talks to Michelle Heffernan about living with the symptoms and the stigma, and her hopes for more kindness and understanding


Amy McGrath shares her story of living with schizophrenia. Photo: Mark Condren

Amy McGrath shares her story of living with schizophrenia. Photo: Mark Condren

Amy McGrath shares her story of living with schizophrenia. Photo: Mark Condren

Someone like Amy McGrath might not be what first springs to mind when you think of schizophrenia. A full-time teacher, mother and community activist, she leads a regular life - under a cloud of paranoia.

"My first year in college was a turning point, as I started to hear things," recalls Amy (39). "As a child, I had always taken notice of what people around me said or thought, but when I was about 19, it became a real complex. When I was listening to the radio, I felt the people on it were talking about me.

"I used to think strangers were talking about me, saying things like 'she's a slag'. I had one experience, the first that sticks out in my mind, of being in a lecture hall, and I confronted a guy I believed was talking about me. He looked at me and said 'You're crazy'."

As a first-year student at UCD, Amy - who is from Navan, Co Meath - began to withdraw from college life, and her bubbly personality faded within months. "I made a huge effort to get into my classes but I wasn't engaging in college life," she says.

"I was nervous and wasn't eating; it was a stress response. I got quite thin and pasty looking. I couldn't sleep. I was highly anxious the whole time. I would just lie awake at night worrying. It seemed very real to me. I thought people were actually ganging up on me."

Amy's mother soon made the decision to take her to see a psychiatrist at UCD. "My mum was a GP and she was very worried," Amy says. "She had to tell me that what was happening wasn't real. She was very tentative and didn't want to leap to conclusions. She just said, 'Let's go see the psychiatrist'.

"The psychiatrist asked me what I was experiencing. He said it was schizophrenia and put me on drugs straight away."

Amy continued her degree, but despite taking medication for schizophrenia - which affects how a person thinks, feels, and behaves - she never felt the issue had been resolved. "I don't remember reacting to the diagnosis. I was still caught up in the delusion," she says. "I remember saying to my friends, 'I feel like people are out to get me and people are talking to me'. I was talking crazy stuff to them."

She continues: "I did continue my degree but I did not do as well as I could have done. I only got a 2.2, which I was disappointed with. Considering what I was going through, it was a great result, but I was so disappointed."

Amy made the decision to train as a teacher in the UK, and found a new environment improved her symptoms slightly.

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"I went somewhere where no one knew me, and I found that instantly made things better," she says. "I felt there were less people out to get me as they didn't know me. It got better for a little while there and I remember I stopped taking my medication as it made me very sleepy. When I started working as a teacher, I didn't mention schizophrenia. I was afraid to mention it. To be honest, I kind of pushed it to the back of my mind. 'It's not really a problem', I'd think, or 'oh, it's all in my head, there's no point in raising it with anyone, no one else can help me with it anyway'.

"I never mentioned the issue in a job interview. I had ups and downs. I had times when I imagined things, and, I would only find out later I imagined them. It never interfered with my teaching though. I never told my colleagues or boss."

Amy was teaching in a school in Kent when her mother became ill with cancer, forcing her to return to Ireland. "When I got home, it was awful," she recalls. "If I went into a shop, or even if I went to the hospital to visit my mother, I felt people were looking at me. I remember being in floods of tears over it. I was crying and really depressed. I didn't have any supports then."

Following her mother's death in 2008, Amy made the decision to return to the UK and later met her now husband in her new job. "He was very understanding about what I was going through," she says, "though I never experienced paranoia with him; it's never about people I know, it's always people I don't know."

Amy worked at a school in the UK from 2011 to 2015 and had "ups and downs", but continued to labour on under stress.

"I think I always did my job fairly well. I didn't experience the same symptoms there, it tends to happen more with strangers. I didn't use the word 'schizophrenia' when talking to anyone about it - I was afraid what they would think, I was afraid I would come across as an attention seeker."

In 2014, Amy gave birth to her daughter Maedbh. "I think I felt better generally then. I was so excited about being a mum. It took my mind off it," she says. "I wasn't taking any medication at the time. Things went a bit back to normal after my daughter was born - my version of normal. Then I stared having problems again with delusions but I always tried to be completely together whenever I was around her. I would never want to cry near her; I didn't want to distress her."

In 2015, Amy and her husband decided to return to Ireland to offer better education and supports to their daughter, but Amy was apprehensive.

"I had a feeling of dread in the pit of my stomach. I just knew that it [the schizophrenia] would get worse, and as soon as we came back, things started to get tough. Any kind of public place I was in, like the airport for example,

"I felt I was being watched or judged. Sometimes in a busy pub or restaurant, I would actually hear people saying things like 'Look at her, who does she think she is?' Just before Christmas last year, I confronted the postman in the post office, and said 'Stop talking about me!' and of course he said 'I don't know what you're talking about'. For a long time, I just put up with what I was experiencing. The last four years have been a roller-coaster, so in January I made it my New Year's resolution to tackle this."

Almost 20 years after her initial diagnosis, Amy has finally received the support she needs. Following a GP consultation, she is now under the care of the Navan Mental Health Services and feels that things are "slowly getting better". She now takes medication - "it does make me sleepy but I take it at night, so it's OK" - as well as speaking to a counsellor and psychiatrist. "The counsellor gets me to think about things I've perceived, she gets me to think about my way of thinking." However, Amy believes the lack of understanding and awareness around illnesses like schizophrenia prevents people like her from receiving much-needed support.

"I do think there is a stigma," she says. "I think the word conjures up bad images of people who are living chaotic lives. People assume a person with schizophrenia doesn't have a job, but I am functioning under stress. Stuff that people take for granted, like walking into a new shop in a new town, fills me with dread. I would love to walk into a bar and not feel self-conscious. I find going into a busy pub or restaurant very, very difficult. That's my trigger point, when I'm surrounded by people I don't know. Those are the things I would love to be able to do. People don't understand the daily reality of an illness like this. It affects everything you do. There's a low-level fear all the time, a fear of people, a fear of going out, a fear of being around other people. It can, at times make it hard to make friends.

"It's massively affected my self esteem. I think the incredible anxiety experience all the time has held me back in general and made me not trusting of people. I think I could have gone further in my career if I hadn't had this illness."

Amy is currently teaching English and Spanish at a secondary school, and looking to the future, she hopes to continue working and for others to show a bit more kindness. "I would like to see people be more accepting and open, so people can speak freely about how they differ and what they suffer from. I think everyone could be a bit kinder because you don't know what another person is facing".

About schizophrenia

Serious mental illness

Schizophrenia is a serious mental illness that causes disturbances in thoughts, perceptions, emotions and behaviour.

It causes a range of different psychological symptoms. These include:

⬤ Hallucinations: hearing or seeing things that do not exist

⬤ Delusions: unusual beliefs that are not based on reality and often contradict the evidence

⬤ Muddled thoughts based on the hallucinations or delusions

⬤ Changes in behaviour

It is one of the most common serious mental health conditions. According to Shine, an organisation which supports people with mental ill health in Ireland, there are about 3,900 people in Ireland living with schizophrenia .

The exact cause of schizophrenia is unknown. However, most experts believe that the condition is caused by a combination of genetic and environmental factors.

The HSE advises anyone concerned that they may be developing schizophrenia to talk to their GP who may make a referral to a community mental health team.

See YourMentalHealth.ie or HSE.ie for more information. Shine.ie also provide a range of recovery-focused supports to people with mental health problems and their families and carers.

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