“I felt this grief that I wouldn’t have my independence anymore"

Sue started noticing changes in her vision in her late 30s and 40s. At a regular eye test in 2023 she was given the devastating news that she had macular degeneration in both eyes and could no longer drive.

“It was like a kick in the teeth,” Sue said.

She came away from the appointment lost, fearful and uncertain about her future. With a family history of glaucoma she was aware of the risks of developing it herself, but macular disease was not something she had ever expected.

“Before the diagnosis I kept falling over, and I just blamed it on the fact that I was clumsy," she said.

“I was falling over fresh air. I wasn’t very good at nighttime driving because I struggled with the light. Car lights or low sunshine would blind me. And now when I think about it, I just couldn’t see.”

Losing independence 

Hearing the news she couldn’t drive was devastating.

“I was gutted because I would have to rely on everybody taking me everywhere,” she said.

“I felt this grief that I wouldn’t have my independence anymore. I want to go out, and I still do with the dogs, but I’m very careful where I walk because my vision is not great at all.”

Sue, who works in retail, is hoping to continue working for as long as she can, but she said it is becoming harder to maintain her independence.

“I just can’t retire yet,” she said. “I want to keep that independence, and I like meeting the public and having a chat with people who come into the store.”

She added: “At 64 I think I’m relatively young to have macular disease. It does feel very unfair.

“I can’t read now because I can’t see the words properly. I used to love reading and I felt again like that got taken away from me.”

No cure

Sue feels more people should be aware of macular disease and the impact it has and said many people don’t believe her that there is no cure for the condition.

“People will say to me, ‘well, get a stronger prescription.’ They will question and say, ‘surely they can do something for you?’ I say, ‘no, I’ve got dry macular, they can’t do anything.’ ‘Well surely there must be something, go to America, do this, do that.’ I Google it and send them the link. There is no cure and sometimes I feel like they don’t believe me.”

She is determined not to let macular disease stop her from doing the things she loves.

“I’m trying not to let it beat me. I’m going to try to enjoy life and see as much of the world as I can.”

Memories to last a lifetime 

Last year Sue visited Bali with her husband, ticking off an item on her bucket list.

“One of my bucket list holidays was to give an elephant a mud bath, and I got to do it. It made me cry. Even if I lose my eyesight, I will never ever forget that moment. It was fantastic.”

She added: “You’ve got to do it while you still can. That’s my motto in life now. Because I am frightened of going blind.

“It gives you more perspective on life. I’ve still got my other senses; I’ve got my health. I have a loving family, a new granddaughter. I listen to books now, so I feel like I’ve got that back. I’ve just had to go down a different route.”

Hope for the future 

Sue is learning to live with macular disease, while still hoping for a cure.

“I have to stay positive,” she said. “I have to learn to live with it because what else can I do? Until there’s a cure, there’s nothing else I can do.

“I’ve just got to get on with my life. I can’t let this define me. If more people knew about this disease, there would be more funding for research and people like me could get their eyes fixed.

“If somebody said to me tomorrow, ‘you’ll be able to drive again, you’ll be able to see and you’ll be able to read a book,’ I would say, ‘Wow! Yes please.’

"It would mean the world. And if not, if my daughters got diagnosed with it and there was a cure, at least something can then be done for them.

“Hopefully there will eventually be a cure, even if it doesn’t happen in time for me.”

Sue is sharing her story as part of Macular Week 2026