'We offer hope that enjoyment in life can once again be possible.'

Posted: Wednesday 08 July 2020

According to research from 2018, people with sight loss were more than twice as likely to have experienced difficulties with unhappiness or depression than the UK average. And the coronavirus outbreak has made isolation and loneliness even more of a pressing issue.

Macular Society counselling co-ordinator Suzanne Roberts says: “There is a lack of routine in people’s lives which can be very unsettling. People miss the clubs they used to go to, and the people who used to pop in to see them.”

Thankfully her team of counsellors has more than 20 years’ experience helping people deal with the complex set of emotions that sight loss can bring. In its first year, they held 101 telephone counselling sessions. In 2019, the team of professional, accredited counsellors delivered that many each month. This year following the coronavirus outbreak, demand for the service has been growing faster than ever. 

One person who has recently spoken to our counsellors is singer Vince Hill (below), best-known for his recording of Edelweiss. He was diagnosed with age-related macular degeneration (AMD) in 2011 but didn’t speak publicly about it until last year, when his poor vision forced him to retire.

While he has managed by making small adaptations around the home and using a variety of gadgets, it hasn’t always been easy.   

He says: “I’ll often throw things across the room in frustration. I can’t recognise faces and I’ve had to give up driving. I can’t go out on my own any more as I’m a danger to myself and other people.”

Suzanne recognises these issues from her clients. “People worry about losing their independence and what will happen if their eyesight gets worse – for example, if their second eye is affected.”

A key part of the counselling experience is reassuring people that their feelings are normal, and that other people with similar conditions react in the same way.

Suzanne says: “The first way we help is by listening and understanding what they are going through. So many of our clients feel unheard and don’t have enough information about their eye condition.”

And Vince agrees: “It’s been great for me having a voice at the end of the telephone. There were times when I told my counsellor about day to day situations that have been very difficult and frustrated me.

“They told me how others get cross about those very same things. That in itself was reassuring as you realise that you are not the only one.

“The support from the Macular Society has been absolutely wonderful.”

There are three key turning points when people are more likely to ask for help from Suzanne and her team: when they’re first diagnosed, when their sight deteriorates, and when experiencing the visual hallucinations known as Charles Bonnet syndrome. But anyone, at any stage of macular disease, can benefit from counselling.

As Suzanne says:“A lady in her late nineties said that at the start she’d thought: ‘What’s the point in talking about my eyesight? That isn’t going to make it better,’” says Suzanne. “But by the end of the sessions her counsellor had helped her adapt to a new way of thinking. She had a different perspective which gave her inner peace.”

Speaking to someone who specialises in supporting people with macular disease means you can get practical help too: “Clients are often inspired to know there is help available in their local area, which reduces their feeling of isolation.”

Suzanne says: “We provide the information and strategies to help people make the most of their vision and build up their confidence again. This often helps to alleviate some of their fear and anxiety.”

After an initial assessment, Suzanne’s team arranges a series of telephone counselling sessions over several weeks. “You can often pick up on a sense of relief that there is an ongoing service out there,” she says. “We will hear that clients are doing more for themselves, which is often a sign that their mood is lifting and their confidence is increasing.”

In short, the team offers reassurance, sympathy, and a new perspective. Or as Suzanne puts it: “I believe we offer hope that enjoyment in life can once again be possible.”

Our team of professional, accredited counsellors provide free, confidential telephone sessions for anyone with macular disease or their family, in the UK or internationally. To find out more, or to request a referral to the Counselling Service, call our Advice and Information Service on 0300 3030 111.