"To me, to lose your sight is the worst thing that can happen"

Posted: Tuesday 02 April 2019

For many people, the news they are losing their sight can lead to shock, fear — even despair. The worry that life will never be the same again. You may recognise some of these feelings and understand how life can feel very frightening and lonely.

Joanne was diagnosed with age-related macular degeneration (AMD) last year and got in touch with our Counselling Service after she was left feeling terrified for her future.  

“When I booked my routine eye test last year, I wasn’t worried about my sight," she said. "I had noticed a few small changes, but at 68 I just thought it was an age thing.

“After several visits to different opticians, one of them eventually gave me the news that changed my world forever. ‘I can see a problem with your macula’, he said.

“I was referred to hospital and hadn’t given it much thought. But in the autumn, I attended my first appointment where I was told I had dry age-related macular degeneration. I asked what that was and what it meant. The doctor was very blunt, saying: ‘it’s a blinding condition, you will eventually lose your sight.’

“I was absolutely numb. I had so many questions. ‘What causes it? What is it? What can be done?’ It was devastating to hear that nothing could be done, nothing would make this better. I was going to go blind. I felt physically sick, I was terrified.

“I thought about everything I would no longer be able to do. From cooking and cleaning, to getting dressed and going out. Your eyes are everything. To me, to lose your sight is the worst thing that can happen, even worse than losing an arm or a leg.

“Thankfully, the doctor handed me a leaflet from the Macular Society. I was desperate for more information. I knew nothing. I found the number for the Society on the leaflet and was able to give them a call. It was then they asked me if I’d like to speak to someone. I didn’t know I could get counselling, but it was soon after that that Suzanne called.

“Suzanne helped me through those first few weeks. She talked to me about things. It was like somebody holding my hand all the way through. She knew what she was talking about and she reassured me. Suzanne phoned every week on a Tuesday and gradually I learned from her what was happening, what was going to happen and that it wasn’t going to happen tomorrow.

“Although the first thing I do every day is look around to make sure I can see, I’m enjoying every minute of my son and granddaughter, while I still can. Seeing them when I can, seeing them when they wake up in the morning.

“Not being able to see was my biggest fear, but the main thing was not being able to see my granddaughter and my son again. Suzanne talked me through this fear and, to be truthful, without her explaining and talking to me I don’t know if I’d be here talking to you now. What I would say to people is, don’t try and bear this on your own - to have someone else to bear this burden with and talk to makes such a difference.

“Counselling does help. Talking to someone is one of the biggest things you can do. It has saved my life to be honest. It calms you down, you realise you’re not on your own.”

More and more of us are being diagnosed with macular disease. That means more and more people every year are calling our Counselling Service in urgent need of someone who understands, who will listen, care and who can provide the best advice.

We must be able to give the next person who calls us the support they need. Your donation today will make sure we can.