Sight loss is a leading cause of disability in older adults and is associated with reduced quality of life and increased anxiety and depression.
In the UK, two thirds of sight-loss is due to age-related macular degeneration (AMD).
Irene’s diagnosis of AMD in her early 60s, added to the number of difficult situations that she was already living with.
She was looking after her mother who had dementia and her brother had recently been diagnosed with terminal cancer. At the time of her diagnosis Irene didn’t fully appreciate what was ahead of her.
“They just give you a leaflet, so I’d not felt that I’d been talked through where that might go,” she said. “I was too full on with my mum.”
Following the deaths of her mother and brother in close succession, Irene, single and without children, decided to move to a new house to make a fresh start.
But her eyesight was deteriorating. On top of this, she was given a diagnosis of breast cancer and she soon found that despite moving to her new home with better light to aid her vision, she wasn’t coping well with day-to day-tasks.
“I was a bit shocked to realise how much I was struggling, even though the house was nice and light,” she said. “So, I started to struggle with cooking, cleaning and obviously with paperwork.
“I was getting to the point where I was just wanting to shove paperwork in the drawer and not look at it. Suddenly, it was all too much for me.”
Irene, who is sharing her story on World Sight Day and World Mental Health Day, returned to the information leaflet she’d been given at one of her hospital appointments and decided to call the Macular Society.
As well as funding medical research the Society offers free information and support, including a telephone counselling service.
She accepted the offer of six sessions with a counsellor which gave her an opportunity to talk about the losses that she was experiencing and the challenges she faces.
“It was so good to talk to somebody that’s not your family or friend who often try to fix you, or to encourage by saying ‘Oh, it’s okay’ – and they just don’t get where you’re at,” she said.
In the sessions with her counsellor Jane, Irene talked about the losses she was coping with including the loss of independence of having to give up driving, the embarrassment of not recognising new neighbours, restrictions on her ability to enjoy a good shopping trip, and the fear that her sight loss would change the dynamics of a close friendship which she valued and wanted to retain.
“In some conversations I got a bit cross – not with Jane but with the circumstances – but I felt safe to let that emotion out,” she said. “Whereas if you’re with someone else they might take offence and think you’re having a go at them, but a counsellor knows that you need to let that emotion out.”
For Irene, counselling by phone worked well.
“It’s private,” she said. “You’ve not got to make the effort to travel, and if you get upset, you’re not in some office, that then you have to come out and you’ve been crying.
“And because I do cry a lot, I found that very helpful. I could feel safe talking to this person on a one-to-one, but in my own home.”
Research studies have shown that, as part of rehabilitation support, counselling can be beneficial for people experiencing sight loss. But often people don’t know about services or how to access them.
From Irene’s perspective more should be done to make people aware of counselling, like that offered by the Macular Society.
She said: “If you’re not sure of your journey, you’re not going to look for that support, until you are at a crisis point, like I was, and then I needed counselling.”
As a result of counselling, Irene feels more equipped to manage the many challenges that come with living with macular degeneration.
“I am very grateful for the counselling that I had with Jane and I feel that it was like a bridge that brought me through that period,” she said.
To anyone coming to terms with age-related sight loss, Irene draws on her own journey to urge them to overcome any reluctance or uncertainty and to reach out for the help that is available.
“It’s not going to bring your sight back but speaking to someone who is trained and has the right skills to supportively listen and guide you really makes a difference in helping you to cope with the losses that come with macular degeneration and to find new hope.”
For further information, see BACP’s briefing on counselling and age-related sight loss. And to speak to a BACP counsellor, visit our Find a Therapist Directory.
The Macular Society can be contacted via its web site www.macularsociety.org