“I’ve learned to live in hope, not fear”: Diana’s story
Almost 20 years ago, Diana was diagnosed with Stargardt’s disease – an inherited eye condition causing a serious loss of central vision. Now 37, she’s sharing her story to raise awareness of her condition and the importance of research.
I had normal vision until I was 18. I was doing a Diploma of Advanced Tourism and I started to notice that I couldn’t read things or recognise people. I’d wave to people thinking they were someone else.
I didn’t know at that stage that it was anything serious, but I would read, and words would disappear before my eyes and I thought I just needed to see someone to get glasses and that would fix it.
I soon found out that glasses would not fix it and I was sent for a lot of tests. I became quite scared and was worried I had retinitis pigmentosa (another retinal disease that often eventually leads to blindness) and would completely lose my sight.
I was diagnosed with Stargardt’s disease, which typically happens in the teenage years. From there it spiralled and got worse very quickly and I lost most of my central vision.
None of the older people in my family – my parents or aunts and uncles – had any vision problems. It was just a combination of genes that came from my parents, and it has also affected two of my sisters.
Now my vision is all blurry in the centre, the detail is all confused and I use my peripheral vision to compensate. I have flashing sensations and motions that make it difficult to deal with glare and bright lights in places like shopping centres.
Most of the deterioration subsided when I was about 20 or 21. I feel like my vision has now stabilised and it won’t get any worse.
At the time I was dealing with what was happening with me, with so much fear about not having the life I thought I was going to have. You go from being a healthy 18- or 19-year-old to dealing with accepting what is happening to you and realising there is no cure.
There was a lot of fear of the unknown, how much worse it will get and how it will deteriorate.
I spent a lot of time in the early days thinking that I would be different, that my vision wouldn’t get worse. For the next four or five years I made it my mission that there would be a miracle.
It wasn’t until I was in my late 20s that I really accepted I was going to have to live with this and stopped waiting for a cure to be happy.
A big part of my journey was learning to accept that there were things I would never be able to do again. It’s sad to realise there is no cure or no treatment, but I needed to accept it would put some limitations on my life’s journey.
There are things that people normally do that I can’t. I can’t drive, I can’t enjoy beautiful scenery, or a landscape or a sunny day like I used to.
For me, having a vision impairment has been a roadblock to my chosen career. I wanted to be a flight attendant. I was selected by an international airline and travelled overseas for the training, but I failed the medical and that was a huge blow.
It was my dream job and the first time I realised that I wasn’t going to be able to fulfil my dreams because of my vision impairment, and that it was something that I couldn’t overcome. I speak several languages, I am well-educated, and I have a tourism degree, but because of my vision I could not be a flight attendant.
I also considered being a midwife, but decided because of my vision and finding it difficult to read charts and monitors it would be too dangerous.
Over the longer term I found it harder to get people who employed me to see beyond my vision impairment.
Making the most of life
I have learned I have to make the most of life and look at how much vision I do have. I think about people who have no vision and how difficult and challenging life is for them. It gives me a lot of empathy.
I have two small children and it is the best job I have had! They are too young to understand my vision impairment, but it does not affect my ability to look after them. I have to rely on others if we need to drive somewhere – so I’ve modelled my life around this and made sure I am close to transport and where I can walk to places.
I have learned to live in hope, not in fear. I am not waiting for a cure to be happy. I have absolutely turned off the idea of looking for a treatment or a cure for me. I have accepted this is my lot in life and that absolutely turned it around for me. I can’t live in the future, I was missing out on the now.
If a cure or treatment comes along, that will be a miracle. I think of it in terms of how it will help other people, people who have less sight than me and the next generation.
I am a glass half full person and I am grateful for the sight I have got, but I wouldn’t want anyone else to have to live through this challenge.