“Contacting the Macular Society was the best thing I ever did”

Being diagnosed with wet age-related macular degeneration (AMD) left Libby feeling “trapped” and scared about her future. But, reaching out for support not only eased her fears, it also transformed her outlook on life with a visual impairment.

Delays to the start of her eye injections in 2020 meant Libby did not get her first treatment for six months, but during that time she took it upon herself to seek information and support.

She said: “I read a lot about macular degeneration and I felt then that this wasn’t going to be great. It was frightening because there were ‘what ifs’ in my mind, that I would never have thought of before.”

Following advice from her optician, Libby also soon gave up driving, meaning she would have to rely on taxis or buses in the Ballygally area, which took its toll on her independence.

She said: “I felt trapped at first, with no car because before I was like an animal in the Savannah to suddenly being confined to a safari park. I did have this great fear of missing out, but actually now I have no fear of missing out. I have realised, there are joys in the little things and I’ve learned to be quite content with my life now.”

Contacting the Macular Society Helpline

She puts her change in attitude down to the support she received from the Macular Society.

“I tell people to contact the Macular Society because that was the best thing I ever did,” Libby said. “I found a lot of comfort from the Macular Society website where I would read other people's stories, which made me start to think that maybe this might not be as bad as I think it is. All you think about at the start is I’m going to go blind, but actually you’re not.

“When I phoned the Macular Society, it was within those first six months and when I told the Helpline I was waiting for the hospital appointment, she even tried to contact them for me, just to confirm that I was on the waiting list, but that was lovely; it felt good to know the charity could do that.

“I really did start to feel quite alright about everything then but I still wanted to join the Macular Society and I get the magazine every few months. And I have my iPad so I get lots of information through the website. It has been really very useful.”

Friendship and laughter from local support

Libby has since joined her monthly Macular Society Support Group in Larne, a place where she has been able to speak to other people with sight loss, who understand life with a macular condition.

She said: “This has been great because nobody else I knew understood what it was like for me before, but I could now go to this group and meet other people with macular conditions. We chat over cups of coffee, have a laugh, get to know other people and you think ‘this is going to be okay’. It’s just at first, this diagnosis fills your every single waking moment. You can't get it out of your head until you can accept it.

“Having a support group has given me, as it does everyone, companionship. We laugh, there’s friendship and you come home after a meeting feeling all the better for it, because if I wasn't going to a macular support meeting, I would feel more isolated. It's good to talk to people who are in the same boat as you.

“It's great, I love it and I'm so glad that I joined.”

Sunsets over the sea

Thanks to the different support she has received, Libby is positive for the future, and remains hopeful of keeping her sight for as long as she can.

She said: “Macular disease changed my life with not being able to drive, but I didn’t want this to spoil the rest of my life. Now I live by the sea with the most beautiful, amazing sunsets but now I'm losing colour. It would be amazing to see like I used to, so it’s the small things like this I want to hold on to for as long as I can before they are gone for good.

“I am out there at night to take photographs, so I’ll still have those when my sight gets worse and I know there’s probably going to come a time when I can’t watch the TV at all, when it’s dark on a winter night and it’s just me and the dog. I will have to find a way to occupy my time then and find something to comfort me. I’ll deal with it at the time but before that, there's a few more summer sunsets to enjoy.”