Video Transcription
Living with a Macular Dystrophy
(Kieran) I have macular dystrophy. It means I have to rely on all the vision outside of my central vision for everything. Most people’s conception of vision problems is either blindness or you need glasses. I don’t fit into either of those categories. The big thing for me was learning to ask for help, not being able to read the whiteboard, not being able to read people’s expressions. That just means I have to guess a lot of the time. Sometimes I get really anxious about what people are thinking.
I can’t be sure. Are they talking to me? Are they talking to someone behind me? So, it’s a bit of a shock to my pride and my way of doing things. It was really hard to get people to understand what it was like. I often have trouble forming relationships with people. It was isolating and it was scary. Towards the end of Year 10, academic things that I was having trouble with, my eyes started to catch up with me. By that point, I was pretty socially anxious, and so I started to break down a bit, particularly over schoolwork.
I voiced my concerns a bit to my mum, and she was good with sensing things weren’t going too well. I saw a GP, and I ended up seeing a psychologist. Somewhere along the lines, I was given a depression diagnosis. A bit further on, that was extended to general depression and anxiety. I think I was about 19. I had a pretty angry breakup, and I was about to start uni. I had decided that that course wasn’t for me, and I couldn’t do it. I couldn’t support myself while I was doing that course. It was going to be too full on.
I moved back home, and I built a fort in my room. I think I built the fort because I wanted to put a barrier between me and the outside world. It was at that point that Mum did a bit of research and stumbled upon headspace and asked if I maybe wanted to speak to someone. I was certainly more than happy to give it a go. I was just really worried that it had got to the point where I was such a burden on Mum that she’d felt the need to go and do that. If I was honest with myself, I felt rubbish, and I was happy to try and do something about that. I started to feel like opening up and really saying things that I hadn’t told people.
When I went to headspace, the psychologist I saw there introduced me to mindfulness. Mindfulness has provided me with an opportunity to interrupt un-useful ways of thinking and decide whether there’s perhaps a better way for me to think about a situation. My psychologist suggested that I do some volunteer work, and the first thing that came up was the local headspace youth advisory group.
When I joined that group, I started to find ways that I could help other people with the experiences that I’ve had. I started getting interested in the Alexander Technique. The Alexander Technique provided an opportunity to get to the bottom of a lot of the things that were going on for me physically and conceptually. No one’s going to ever completely understand me, whether I have a vision impairment or not, whether I have depression or anxiety or whatever it might be. But when people make an effort, especially when they listen to you when you seek them out, it makes a big difference.
The good thing about going to a place like headspace is that people will try to understand. I think it’s really important to take that first step of asking for help if you need it, and can’t do it on your own, and it’s not getting better trying to do it on your own. Then something’s got to change.
Video by headspace
