'People can't see that I have brain damage'

Date

Claire Duley

A 22-year-old sufferer of foetal alcohol spectrum disorder opens up about what it's like to live with the disease.

Claire Duley shares her story on Insight on SBS ONE.

Claire Duley shares her story on Insight on SBS ONE.

I always knew I was different to the other kids. I’d always say and do weird things that other kids wouldn’t do. In school it was very hard making and keeping friends. I struggled in class - it was really hard to understand and remember things. I’d just get really overwhelmed and blank out.

Blanking out is just like shutting down - like my brain just switches off. Sometimes I snap out of it myself but usually people have to say my name over and over again to bring me back. The doctors call it sensory overload. It happens to me a lot.

Each day I put on my ‘social mask’ and pretend to be normal. If there’s one person talking I’ll watch what the other people are doing and copy them. I’ll laugh when they laugh. I’ll smile and nod and try to say the right thing. I feel like I have to do that to get by in life. Because I look normal and sound normal, people expect me to act normal. People can’t see that I have brain damage.

One of the things I struggle with is remembering things. It’s funny, I can remember phone numbers and jokes but I can’t remember the important things, or a specific instruction. If you change my routine I can’t just store new information in my brain, I have to write everything down.

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I also really struggle with my anger. The most stupid things trigger it off. Something sparks it and it escalates really quickly and I’ll start yelling and screaming. I’ll literally be tantruming like a two year old. It takes a whole lot to bring me back down. When I’m calm again I do feel guilty. I feel pretty numb and sad.

Sometimes I tell lies and make up stories to make my foster carer and my mum look bad so I can play the victim. I know that sounds terrible. It’s just that I like feeling like I’m the victim because it means I don’t have to blame myself for my behaviour, I can blame someone else.

I often ask myself what my life would have been like if my mum hadn’t drunk while she was pregnant with me. At times I’ve been angry with her but then I calm down and realise it’s not her fault. She didn’t know she was pregnant with me until she was three months along and no doctor ever warned her not to drink. She didn’t know having a few drinks every night would harm me.

I remember when I was first diagnosed with Foetal Alcohol Spectrum Disorder. I felt relieved to know there was a reason why I struggle the way I do. But then after the relief came the sadness and anger and disappointment that there is no cure for this.

Getting a diagnosis was very difficult. My foster carer took me to lots of different doctors but no one had ever heard of FASD. Even today a lot of the doctors and specialists we visit have never heard of it.

I’ve tried to get help for many years but services always turn me away. They say I’m too complex and that they can’t help me because FASD isn’t classed as an official disability in Australia. It makes me very upset and frustrated. I feel like I shouldn’t have to wear a hearing aid or sit in a wheel chair in order to get acceptance and help. I have an invisible disability. 

It would be great if more people understood what FASD is. I feel angry when I hear about doctors saying to women it’s ok to drink even a small amount during their pregnancy. There are lots of kids out there like me who are living proof that alcohol can damage the baby’s brain. There is no safe level of drinking during pregnancy, so why would you take the risk?

Life is very hard for me at the moment. I have an eating disorder that consumes every hour of every day and my anger is out of control. But I’m lucky to have some people in my life who love me and are trying to get me some help. Once I get some help I would love to go to TAFE and do creative writing. This is good practice!

FASD is a range of permanent physical and mental impairments that can be caused by alcohol exposure in utero. Tune into Insight tonight at 8.30pm on SBS ONE to hear more of her story, when the program speaks to those with FASD, pregnant women, parents and doctors. #insightsbs