Kathy’s Story: Learning to Advocate for Yourself

When Kathy was diagnosed with glaucoma in 2016 at the age of 64, she was still working full-time as a teacher specialising in early years education and supporting students with additional needs. But her journey to diagnosis was far from straightforward. 

“I was initially misdiagnosed and had to advocate very strongly for myself for testing because I felt that something was not right,” Kathy says. At the time, she felt frustrated and unheard. “I was extremely upset and extremely angry that I’d been brushed off.” 

The challenges continued after she was referred to an ophthalmologist who had limited experience with her specific condition, pseudoexfoliation (PXF) glaucoma. Treatment initially focused on multiple eye drops, but Kathy soon discovered she was allergic to them. 

“The journey became more difficult when I was referred to an ophthalmologist who was not experienced in dealing with PXF glaucoma and started taking me through a journey of relentless drops, which as it turned out I was allergic to all of them.” 

As her vision continued to deteriorate, Kathy decided she needed a different approach. 

“I insisted on a referral to another ophthalmologist as I had reached my breaking point.” That decision proved to be a turning point. 

“That was my lucky day,” she says. “That’s when I first met my current ophthalmologist who acted extremely swiftly and I had my first surgery the following Tuesday.” 

Since then, Kathy has undergone several surgeries on her left eye and preventative surgery on her right eye, which is not currently affected by glaucoma. While the experience has been difficult, she says finding the right care team made a huge difference. 

“It wasn’t until I began to work with my current team that everything was explained carefully to me.” 

Glaucoma has had a significant impact on Kathy’s daily life. Eventually, she was encouraged to retire early from teaching because the school was unable to adapt her role to accommodate her changing vision. 

Today, she continues to live independently but has had to make several adjustments. “I have a medical driving licence with restrictions,” she explains. “My conditions are between 5am and 5pm in winter and 6am to 6pm in summer with a range of five kilometres.” 

Loss of depth perception and vision on one side has also changed how she moves through the world. “I have to be very conscious to slow down and not move as quickly as I used to.” 

To help maintain her visual awareness, Kathy spends time doing puzzles that challenge her perception. “I’ve been encouraged to do a lot of jigsaw puzzles. I do wooden ones because lack of depth perception makes the cardboard ones impossible to pick up.” 

Despite the challenges, Kathy remains determined to maintain her independence. “I still live by myself and I still live reasonably independently.” 

Reflecting on her experience, Kathy has a clear message for others who are newly diagnosed with glaucoma. “Be as proactive as you can possibly be,” she says. 

“Do not ever be afraid to advocate for yourself. Do not take no for an answer and do not leave until you have answers to all your questions.” She encourages people to come prepared to appointments and ensure they understand their care. 

“Make sure all your questions are written on a sheet of paper before you go in and tick them off as you get your answers.” 

For Kathy, learning to speak up and find the right support has been one of the most important lessons in her glaucoma journey.