“I used to cry in the shower – there was so much anger”

Counselling has been a “lifechanging” experience for Trevor, who hit his lowest point when macular disease began to impact both of his eyes.

Trevor was diagnosed with central serous retinopathy (CSR) in 2012, and later wet age-related macular degeneration (AMD).

For much of the time after his diagnosis, Trevor noticed some changes in the vision in one eye. It didn’t affect him much at first, but a few years later, he started to lose sight in his left eye too.

Sight worsened after diagnosis

Trevor said: “In the last five years it's really, really ramped up in my central vision and that has a much bigger impact on me, and has been difficult to deal with.

“That’s when I really thought ‘I'm losing my sight, aren't I?’ Now both my eyes were affected and that’s a difficult thing to get your head around.

“Sometimes you think it’s going to be alright, and then you get another bleed and it’s like you’re being punched constantly, it’s relentless,”

He had only worn glasses for watching TV or using the computer, until he first spotted a change while at work.

Trevor said: “I noticed this distortion in my eye so I went home that night and I thought I’d put my glasses on to watch TV but it was like I had a smudge on the lens. I cleaned the lens and I still had this issue. So I phoned the doctor the next day and I got a referral to the hospital immediately. I knew then that this wasn’t normal but I went up, had the tests and I got my diagnosis.

“I was told to go away and look up CSR on Google. 13 years later, and I have this in both eyes with no central vision in my right eye, it’s just off the centre of my left eye.”

Getting workplace advice was the first step

Trevor, who works in transport management, got in the touch with the Macular Society where he was able to get workplace-related advice, from office lighting tips to knowing what his company should be doing to help him.

But Trevor’s mental health declined as he began to lose more of his sight. It affected his independence, as he lost his driving licence and HGV licence, also impacting his passion for road biking and triathlons.

“I’ve struggled at work, with guys looking up to me asking things and in my head I’m like, ‘guys I can’t help you right now, I couldn’t even dress myself this morning.’

“I can’t do this or that but what I’ve learned is actually yes you can do things, it might just not be as easy as it used to be. It's about getting your head around things, and taking time to try something in a different way, where it’s possible.”

"Why didn't I do this before?" - The impact of counselling

Trevor, a father of three, praised the telephone counselling he received from the Macular Society for helping him to move out of a dark place.

“I was looking for someone who could help me and give me advice – I knew I needed it,” he said.

“When I got the callback from the Macular Society, they were giving me advice and listening to me, and that was so much more beneficial than what my GP could offer. There was someone who understood what I had been going through, who understood my condition and the treatments.

“It’s only after you do something, you think ‘why didn’t I do this before? Why did I have to get to a low point before reaching out?’  The advice I was given and having the right people to talk to, well that was lifechanging. It’s exactly what I needed.”

The sessions proved to be a turning point for Trevor, who had found himself more and more frustrated in everyday life.

“I got to a point where I would cry, I used to cry in the shower because nobody could see my crying there. It was a daily ritual. I’d step in the shower and it would all come out. There was anger involved too, not at anyone but I was angry this was happening to me, that I have this condition and it all boils from frustration.

“It's born out of trying to make a cup of tea and missing your cup with the kettle, pouring your beer on the floor and bumping into stuff. There are frustrations in needing to make adjustments in your daily life, it’s almost childlike like having a tantrum, but you know, you can do things and you need to give yourself just that bit of time and space.

“Counselling has made me more open minded, more able to adapt and enabled me to open up and ask for help when I need it, rather than botting stuff up. All of this stuff has been lifechanging, because nobody else was there to tell me anything about living with macular disease.”

Upcoming rugby tour to raise awareness

Trevor is embracing 2025 with a fresh mindset, reigniting his passion for cycling. He will also continue coaching his local under-11s rugby side, which will be proudly wearing Macular Society branded shirts during an Easter tour to the Lake District.

“They’re a really good group, very successful and I really enjoy coaching them,” he said. “I struggle if I’m refereeing, and you have loads of kids around the ball. But I’ve got other people helping out more this year, and that’s needed because we’re trying to teach them the game and the rules and it’s not fair if I can’t see properly.

“My impairment doesn’t mean I enjoy it any less. The teams are getting bigger, stronger and it’s a pleasure to coach a cracking group of kids.”