“You can learn so much from talking to other people”

For the past 17 years, Julie has been helping others with sight loss, bringing them together as part of the Macular Society’s Jersey Support Group.

“You can learn so much from talking to other people, you get ideas about everyday living and ways you can cope with changing sight,” she said. 

“The support group is a wonderful example of that and we’ve had people coming for many years, who enjoy coming out, chatting with friends, meeting others and getting out of the house.”

Julie, 64, has been on her own journey with sight loss but for years did not know anyone she could open up to about her diagnosis and struggles adapting.

Living with punctate inner choroidopathy

She was diagnosed with punctate inner choroidopathy (PIC) when she was 28. Within a year she had sight loss in both eyes.

She said: “My vision is considerably worse now so I'm finding things more difficult such as reading and doing everyday jobs.

“I had never heard of macular disease when I was diagnosed. I started noticing when I’d be up with my young son late at night, with the small light on and I could see a kink in the doorframe which I knew wasn’t right. I went to see the GP and he sent me off to the eye clinic where I was diagnosed with PIC. It was a big, complete shock.

“Luckily I could still drive then but within six months my vision deteriorated so much to the point where it is now. It was so quick and so severe.”

Having family she could rely on close by has been a huge help to Julie too. She hails her husband Tim and sons Tom and Nick “who have been amazing, understanding and compassionate of my condition.”

Early challenges adapting to sight loss

Despite this, she struggled under the weight of her changing sight.

Julie said: “Early on it was difficult and I got very depressed as well. When my right eye went too, I knew I couldn’t drive anymore. I didn’t renew my licence after that but I’ve been lucky with family nearby and they have been my taxis.

“It's when you're driving, when you're driving the car, you can't judge the edge of the road or the wall, the central line and I knew it wasn’t a good idea to carry on driving.

“I couldn’t cope around the house, just to clean it became harder. I went on antidepressants because I was so down. I’d wake up in the morning and I’d be thinking about my eyesight. I’d go to bed and I’d be thinking about my eyesight. I was getting very down but the doctor put me on the pills, a low dose, and it perked me up, they worked for me.”

The impact of talking about sight loss

The real turning point came a few years later, when Julie was introduced to a now close friend, who also has sight loss.

Julie said: “She alone really lifted me up a lot and that’s where I get my motto that it's good to talk. Now I always tell people it's good to talk. I spent many years not talking about my condition; I hadn’t met anyone with sight loss but when I finally did, I’ve not looked back since.

“Honestly, it's so good to talk to other people and to meet other people in the same situation. It makes such a difference in how you can cope.”

Becoming a Macular Society support group volunteer

In 2009 Julie was offered the chance to attend a meeting about starting a Macular Society support group in Jersey. She offered to volunteer and has continued to do so for nearly two decades.

She said: “I just thought I could help, I put my hand up and I’m glad I did. I’ve had a great time with the group.

“People love to come and just chat. Macular disease is such an isolating disease but the monthly meetings get them out of the house and it just lifts them up a bit. There are conversations about what they’ve been up to or what they’ve been doing to adapt or doing new things, it’s a place to ask questions and sometimes we get specialist equipment demonstrations.

“There are days out too; going shopping, visiting the garden centre and getting a coffee. It’s just enjoyable to help people, get them out and it’s lovely seeing these people still have fun.

“And I've met some lovely people over the years. New people join time to time as well, whether they are members of the Society or not it doesn’t matter, and everyone appreciates this space.

“It's been very satisfying to volunteer and I think it's just good to help other people. To be able to get people who are maybe lonely and to bring them to the group where they can meet others and stop them from being so isolated is really important.”