'I've had to deal with all this in my own little world while the coronavirus is going on'

There is no good time for a diagnosis of macular disease and it can be a shock for anyone to process at any time. But, for Sue, she said the timing of her diagnosis has left her mental health ‘shattered’.

After three months in hospital over Christmas for open-heart surgery, Sue, aged 55, was sent home to recover.  It was then she noticed wavy lines in her vision.

She said: “I went to the eye clinic one afternoon and there was a five-hour wait for an appointment – that’s how busy it was. The doctor there said they would give me an injection there and then, but I was really anxious about that. I’d been waiting five hours, it was getting near to tea time and obviously I’d been through a lot, so I actually said no.”

A few days later and after the UK went into lockdown, Sue had a sudden bleed in her right eye, related to her type 1 diabetes. She was unable to receive any injections until the blood was removed.

She said: “I'm still seeing wavy lines. Lines are wonky on my phone screen. My eyesight is freaking me out. Everything is freaking me out.”

Due to the sudden bleed and damage to her eyesight Sue had to give up driving. “I’ve always been pretty independent," she said. "I brought my sons up as a single mother and have always just got on with things. But not being able to drive was a massive loss of my independence. I’ve felt a lot of frustration, anger and sadness.

“There’s so much uncertainty and it does impede on me. I know it impedes everybody, but the fact that there is the coronavirus also bringing uncertainty makes it a lot harder. I’ve had to deal with all this in my own little world while the coronavirus is going on. My mental health is shattered.”

Sue called the Macular Society and was put in touch with the counselling service. She said it has helped to talk about her condition with someone who understood what she was going through.

She said: “The counsellor was very supportive and understanding. She was a really nice person, was and seemed very knowledgeable and also very personable and down to earth. It was like I was talking to someone who was a friend. It sounds strange that, because it was over the phone but I did open up to her quite a bit. It was really good to talk.”

She added: “There’s no cure for macular degeneration and I didn’t know anything about it before my diagnosis came about. I think that makes it even more shocking. Talking to someone really helped me. I’ve had a lot to come to terms with.

"For anyone else being diagnosed I would tell them to strive for help and advice, especially in these times. Services are limited but people are still ill and have conditions. It's not just about the coronavirus. We have to live with the virus seemingly, and many have to cope with their existing conditions aswell. Mental health is of paramount importance and we have to talk about our mental health, and in doing so hopefully more services for mental health will be funded." 

If you have been diagnosed with macular disease the Macular Society has a range of support services which could help, including counselling and telephone befriending. For more information contact our Advice and Information Service on 0300 3030 111.