'I went along to the group and within moments it really changed my life'

Posted: Tuesday 03 March 2020

Steve Cooper was first alerted to a problem with his eyes during a routine optician’s appointment in 2015 – he was referred to hospital for further tests. Sadly, Steve says: “They weren’t very helpful, didn’t really explain, never mentioned macular degeneration or anything. I was left feeling quite alone. They said ‘there’s no treatment, nothing I can do for you. Off you go.’”

Steve carried on his life as normal, without knowing much information about his eye condition. By 2017, he was finding it harder to drive at night but as a self-employed builder needed to do so to maintain his business and independence.

Then, in January 2018 he fell ill with something else, and in February 2018 had a breakdown. “I do think that the struggling with the vision and changing my lifestyle to cope with it really had a big impact”, says Steve. At the time, he still hadn’t had any further tests or treatment on his eyes.

“I went through a tough summer and autumn and my eyesight was the least of my problems. But before I went back to work I thought I should have an eye test.

“In December 2018 we were due to go away for Christmas, and before we went I had an eye test that gave me the news I was dreading – I don’t pass the criteria for driving. I was devastated and didn’t know what to do with myself.

“My wife was very supportive, but we didn’t know what to do, because the opticians didn’t refer us to the hospital or anything. We were lost.

“While away over Christmas, we met up with friends. He said both his parents had age-related macular degeneration (AMD), so fully understood what the condition was and gave me advice to search online for the Macular Society and people in my area.

“When we came back in the new year, I looked it up on the internet and found that the closest Macular Society Support Group to our area met a bus trip away. I didn’t know what to expect, what the atmosphere would be like, or much about my own condition.”

“I went along to the group and within moments it really changed my life. The acceptance from everybody. The first time I went the individuals couldn’t have been more friendly. They understood the condition.

“The thing that struck me was that they spoke to my wife privately to see how she was and how she was coping with the news.

“We came out of there and I thought ‘I’m not alone’. We’ve found people who are going to help as much as they can. They think about you as an individual and your own story, and your own problems and obstacles.

“It didn’t help my eyesight, but it helped me to cope with it better. You find out you’re not the only one. You still have to deal with it, but talking to people helps. I don’t worry as much as I have been doing.

“The advice to get in touch with the Macular Society was life-changing.”

Find your local Macular Society Support Group, or call the Advice and Information Service on 0300 3030 111. 

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Our local support groups are for people of working age and older, and provide information, support and friendship to people with macular disease and sight loss.

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We provide free information and support to those with macular disease, along with their family and friends, to help people keep their independence.