"People don’t consider that there will be a life after diagnosis"Posted: Wednesday 01 March 2023
Beverley has been a Macular Society counsellor for more than 20 years. In this time she has spoken to hundreds of people struggling to come to terms with the life-changing diagnosis of macular disease.
“Many people don't ever consider that there'll be a life with this condition after diagnosis,” she said.
“Often they can't think of anything positive, but life doesn’t stop and there’s still things to look forward to.”
But Beverley, who was diagnosed with macular disease at the age of 11, said although sight loss can make things more challenging, there is a way around most things, even if it means they take a bit longer.
In her role she speaks to a lot of people with age-related macular degeneration (AMD). “There's nothing worse than getting this condition when you're in the 70s and 80s and even 90s, because it's very scary for that age group,” she said. “But, sewing a few seeds to say there are some things you can still do, and not focus on the negatives, can be helpful.”
She added: “My experience is going to be different because we're all different in how we deal with things. If I can share what I do, it doesn't mean it's going to work for everyone, but people do seem to take on board that it's worth a try, or 'well she's done that, maybe I should have a go.'”
Beverley said that frustration is an inevitable part of sight loss and although she has had some setbacks her determined attitude has helped.
She said: “I can identify certain times in my life where I have felt very frustrated, and I envied people who can ski etc. But, I've done it all now. I've done that throughout my life. If somebody said to me ‘you won't be able to do that with your limited sight’, then I will go out my way to prove them wrong. I was a bit determined though, or stubborn, and we're not all like this, that's what you have to consider. It's so scary for some people.”
After recently becoming a grandmother Beverley knows she has to accept that to care for her new granddaughter she’ll have to find different ways to do things.
She said: “My daughter is not phased really because she knows what I'm capable of and knows I'd never let any harm come to her.
“I might do things a little bit different to them but I had two babies and was very poorly sighted. I had a newborn and a two year old.”
While changing a nappy may be challenging for Beverley she said it’s still something she’s determined to do.
She added: “They may do it quicker when they change a nappy, I may take my time, but we'll get there in the end and I think that's what we have to do with everything with this condition. We get there, but we have to do a little bit different to other people. It's just getting the clients to that point where they start looking at what you can do and not what they can't do.”
“I encourage people to sit and look at what they can do, and what they are doing and that builds their confidence, because they are managing to get out. They may ask for a little bit of help, but they're doing all these things. So nothing's really stopped. They're just doing it a little bit differently.”
Beverley’s top practical tips include:
- Using a slow cooker “There are still things you can’t do and I wouldn’t encourage anyone to use heavy casserole dishes in the over, but slow cookers are very safe and easy to cook with. I also use a George Foreman for grilling, that's very safe too.
- Stir frying in a big wok “Some of it escapes, but it’s easier in a bigger wok and it’s more likely to stay in the pan.”
- Watering plants using your hand “I once had a lady who was ready to throw out her indoor plants, but I told her to try this trick and she was delighted because it worked. If you put your index finger down the middle of the plant. And then you pour the water down the back of your hand, it means you won’t spill it on the floor.”
- Using dark chopping boards for making sandwiches “I would say suggest getting some dark plastic breadboards, they're brilliant. As long as you've got a dark background, everything will end up in the sandwich. It's when you put a sandwich on a glass chopping boards, you are placing a light colour on a light base, and you're finding out that half the filling went onto the glass. It's all about contrast.”
Beverley's advice to families supporting someone with sight loss
Beverley admitted that often people lose confidence because family members start doing more for them. But she said the key to remaining independent is to allow those with sight loss to still do the things, as long as they are safe.
She said: “There will be things they can do so don't take it away, because all you're doing is taking that confidence away. There's a lot of equipment out there that can help.
“Family members will say, ‘well, we're not going to let you use your oven’, which is fair enough, I quite agree, because lifting heavy dishes out of the oven is probably something you're not able to do now. But have a look at what they can do, such as use a slow cooker.”
She added: “Once you understand there’s a way around things their confidence just grows, because then they are doing things for themselves and they're not feeling a burden. Very often the elderly clients feel a huge burden to the family.
“It about trying to stop people from immediately saying, ‘Oh, no, I can't do that’ and throwing things out or stopping doing something altogether. It's trying to find a way.
I've always to myself, 'well, this didn't, that didn't work but we'll try again, try plan B’.
For more advice on living with macular disease, read our practical tips. Alternatively, if you have any tips of your own, you can share them with us at email@example.com
If you or a family member are interested in accessing the Macular Society’s counselling service contact us on 0300 3030 111 or email firstname.lastname@example.org