Diagnosis out of nowhere: Isabella’s story
Isabella knows the glaucoma journey well. She was diagnosed nearly a decade ago in her early 50s, and has dealt with the ups and downs of treatment every day since.
Visiting her daughter and new grandchild in Bristol ten years ago, Isabella was shocked to hear her daughter complaining about the hair Isabella had left all over the bathroom floor. For the life of her, Isabella couldn’t see any of it. After an urgent visit to the local Specsavers, Isabella was told to visit her doctor as soon as she got back home to New Zealand. With a glaucoma prognosis, there was no time to lose.
“I had an absolutely sick feeling,” says Isabella. “I kept on thinking – why had I let the cost of glasses put me off going to the optometrist for so long?”
Isabella had hoped for a speedy treatment upon returning home. However, over a six month wait, a misdiagnosis, and being bounced between Christchurch and Dunedin facilities meant that Isabella was robbed of three-quarters of her vision.
Even though she’s undergoing constant treatment, everyday life can still be complicated for Isabella in a way that well-sighted people might take for advantage.
“I had always wanted to keep my independence... I remember feeling so frightened,” says Isabella, who used to be an avid walker, enjoying an hour or so out on an evening. With a loss of depth perception, curbs and uneven pavements are a risk that she struggles to manage. Reading and writing are more difficult, so fonts need to be bigger and clearer to see.
“With glaucoma, you have dead spots in your eyes,” she explains. “In the bright lights of the supermarket, I can’t see things; I can’t read labels. It’s a pain in the neck trying to read things.”
Glaucoma can be an isolating experience without a helping hand along the way, and Isabella was looking for some comfort and information about her treatments after her diagnosis. She soon discovered the Glaucoma New Zealand website – as well as the Eyelights magazine, which quickly became a welcome wealth of information.
When Glaucoma NZ organised a public meeting in Isabella’s town of Timaru, Isabella was on board immediately. “I could see that we really needed the support here, like many other towns in New Zealand must do,” says Isabella. “There’s a sense of not being alone when you can hear about other people’s glaucoma journeys and talk with one another.”
“I was interested in the operations, how people were responding to the latest treatments. There were lots of hints on coping – things like how to shower and wash your hair, or how the post-treatment eyewear affects your sleeping. It’s great to connect and learn what works well for others so that we can all live the best we can with glaucoma,” she says.
“It means a lot to find friendly faces on your glaucoma journey.”