Glaucoma and me

After delays in receiving care, the vision in Weale’s left eye deteriorated to the point where he no longer felt confident driving.

The 54-year-old gave up his job as a sales manager – which previously saw him driving more than 50,000 miles each year to visit clients at different locations across the country.

But perhaps one of the most profound effects is that he can no longer trust the information that his eyes relay to his brain.

Sitting at home, he would think he saw his cat out of the corner of his eye, before turning to see there was nothing there.

“It’s quite scary because you begin to think, ‘How can I trust anything I see from now on?’” Weale shared.

Weale recalled a cloudscape painted on the corridor of one of the hospitals where he received treatment.

“When I look at it with just my good eye, I can see very distinctly where the blue is and what shape the clouds are. When I use my other eye, all of the clouds change places. Some of them disappear,” he said.

Matt Weale

Matt Weale, glaucoma awareness advocate

Following his vision loss as a result of glaucoma, Weale stopped playing football and performing in a band. Where previously he would have been comfortable speaking in front of hundreds of people, as his vision deteriorated, he developed symptoms of anxiety and depression.

“Glaucoma has affected me both mentally and physically. I lost my confidence,” Weale shared.

Weale shared that there is a lack of awareness around glaucoma among the public.

“Before I had glaucoma I didn’t know anything about it. I didn’t know younger people could get it,” he said.

Since his diagnosis, Weale has volunteered for the Glaucoma UK buddy scheme – where people with glaucoma are matched with someone who has had a similar surgery or procedure so they can discuss any questions or concerns.

“I think it is nice to know that you are not alone,” he said.

A personal glaucoma record

He ordered free copies of the booklets from Glaucoma UK after noticing that patients were compiling makeshift versions of a care record themselves.

“I had noticed that a few of my patients would have a little diary where they would write their pressures,” he said.

O’Kane shared that the booklet helps patients who may not be best placed to recall every detail of their treatment from a hospital visit.

“Sometimes patients will go into hospital, they will let people poke and prod, and then they will walk out and not really know what happened,” he said.

“This gives them back a little bit of their agency. They can keep track of their vision and pressures,” O’Kane observed.

Daniel Whitbread, head of support services at Glaucoma UK, shared that people with glaucoma can face a lack of understanding when speaking about their condition.

“Speaking to our helpline is often the first time they’ve been able to have a longer conversation about all of their concerns and questions. People are often fearful of losing independence, or not being able to do the things they love, so we try our best to provide them with the right help, support and information to empower them,” he said.

He highlighted that optometrists can play a key role in raising awareness about glaucoma.

“The local optometrist will often be the first time a person hears anything about glaucoma, so in this sense they play a crucial role in someone's glaucoma journey. Providing good, basic information and providing the time and space to answer someone's initial questions is incredibly valuable, particularly early on,” Whitbread said.

“Even once diagnosed, we find that people are often uncertain about results, treatments, and prognosis, so we would also encourage optometrists to signpost to our helpline and resources, no matter the stage of the patient's journey,” Whitbread shared.