“We’re all hoping research can fix this, aren’t we?”

Gill knew what macular degeneration was as it was something her mum had and she had been taking her to regular eye appointments for many years.

But, when the optician said she had it in her own eyes, she didn’t take much notice, because it wasn’t affecting her vision.

“I had no concerns,” she said. “I was so busy; working, being a carer, and I’ve got grandchildren, so I was caught up in the routine of life. I never gave any thought to the fact that my own eyesight might be deteriorating.”

Grief and sight loss

Then Gill’s mum died, and she began to notice that she was struggling.

“I realised something significant was happening with my eyesight. I was actually dreading my next eye test,” she said.

“My mum used to say, “My eyes aren’t working today.”

Gill’s diagnosis coincided with the extreme grief of losing her mum and she said it felt like a ‘physical reaction’ to grief.

“I thought she was managing really well, but now I’m understanding much more about what life had been like for her. Now that I’m experiencing it myself, I appreciate what she went through as she was ageing, and living alone.

“Having macular disease is a lonely experience, on a daily basis. You’re under a cloud and you can’t ignore it. I looked back and felt acutely all the things my mum went through. And knowing I was likely to face similar challenges – it really hit me like a bolt out of the blue. It was quite grim because I knew a lot. I was also very aware that my mum was in her 80s and I’m only in my 60s, which is difficult because I consider myself really active and healthy.”

A knock to your confidence

She added: “It really affects your confidence. I don’t want to fall or trip, so I’m very cautious now. I have to watch where I step. When I’m out, I’m worried I won’t see people I know. I don’t read as much as I used to as it takes much more effort. I have to use a really good magnifying mirror to do my makeup.

“It’s the effects that losing my sight has on my life. It’s difficult to explain the impact to friends, because I look the same. After my mum died and my diagnosis was confirmed, I went into a bit of a tailspin.”

It was at this point Gill called the Macular Society and she started counselling a series of telephone counselling sessions.

Hope discovered through counselling

“My counsellor was brilliant, just amazing,” she said. “She gave me so much knowledge and insight. I really looked forward to talking to her every week. It wasn’t difficult, or upsetting – it was a wholly positive thing.

“She helped me to stay positive. And she reassured me that I wouldn’t necessarily follow the same path as my mum.”

Gill also discovered that there is a lot of hope for the future around research.

She said: “We’re all hoping research can fix this, aren’t we? We all want to know that there will be a cure in time. I’m very keen to take part in any research. I’d love to be part of a clinical trial. I just want to see something positive come from my experience – a legacy for the future. We are an ageing population, and macular disease will continue to affect more people. It’s definitely lifechanging.

She added: “You have to find a balance between taking macular disease seriously and not letting it completely overshadow your life.”

Don’t let macular disease take over

“There are things you can do to help yourself, and they’re everyday things we can all do. Protecting your eyes from the sun, paying attention to diet, exercise and lifestyle. And of course, going for regular eye tests. But it’s not just about your eyes – it’s your whole body and mind. Don’t let macular disease take over; try not to despair. I am determined not to dwell on it all the time. We all want to know that a cure is in our future.”