You Don’t Look Sick is our weekly series about living with an invisible illness or hidden disability.
Each week, we speak to someone about living with their condition and the judgements they face because you can’t always see that something is wrong
Kelly Ephgrave, 38, from Fife, Scotland, has an eye condition called juvenile macular degeneration, which has led to sight loss.
Macular degeneration means that the macula, which is at the back of the eye and helps you to see details, starts to breakdown.
Affecting over 1.5 million people, it is the biggest cause of blindness in the UK.
Kelly’s condition is an inherited genetic form, rather than the more common age-related version, which can happen later in life.
She was diagnosed at eight years old, as she was tested because her mum and grandmother had the same condition.
As it is a degenerative condition, Kelly’s sight loss has slowly got worse and she was registered as partially sighted in 2016.
Kelly tells Metro.co.uk: ‘It had no impact on me when I was younger, as I just didn’t understand. I knew I had something wrong with my eyes but because I have always been able to see, it never bothered me – until a few years ago.
‘It was only when I started to notice real differences that it started to affect me. I just struggled with my central vision. I was trying to learn to knit and I couldn’t get the hang of it and other things just became more and more difficult, like cooking and making tea.
‘I went back to the doctor and at the time I was having driving lessons. But, the doctor told me to stop my driving lessons and said I wouldn’t qualify for a license with my vision.’
There is no treatment or ways to slow down the degeneration and it will continue to get worse as she gets older.
The condition has forced her to give up jobs she loves, including as an air stewardess and as a dental nurse, and now has a big impact on her life.
‘When I make my morning cup of tea, I over or under fill the cup,’ she says.
‘In the shower, it’s hard to know what products to use because distinguishing between the bottles can be difficult. When I’m putting my makeup on, I have to go right up to the mirror.
‘Cooking is really hard. I have to try not to cut myself and don’t always put the right ingredients together. I once tried to fry an egg in cordial. I’ve had to cut back on cooking so much as it’s difficult and I have to rely more on pre-prepared things like chopped veggies.
‘I trip over on the walk to school and I need my boys to help out sometimes to make sure we’re getting on the right bus or train.
‘I don’t often go out at night as my vision is worse then.’
Although being partially sighted means simple tasks are much more difficult, Kelly feels that because she doesn’t use aids to help, people don’t recognise that she is disabled.
She says: ‘I’ve been asked on the train why I have a pass for someone who is visually impaired as “I look ok”. People forget that I am visually impaired.
‘Personally I find that sometimes it can make me anxious as I think that others think that I come across rude as I don’t see them in the street or passing in their cars. I don’t really recognise most people until they are about a metre away from me.
‘It can be frustrating as sometimes I need more time than others to pay for things, check menus, bus times and general things that you need to look at.’
Kelly uses technology to help, which has meant she has been able to continue with her psychology degree with the Open University.
Although these adaptations have helped, the deterioration in her sight over the last few years has been hard and she has needed a lot of support.
‘I use magnifying glasses, phone apps, large screens and I have a machine that reads my uni books out for me,’ she says.
‘My family are a huge support and there are a number of groups on social media of other people who have the same or similar conditions.
‘In these groups everyone shares different hacks of making day to day life easier. I plan my routes in advance and if I am going somewhere different I will research it beforehand, for example if I’m going to a restaurant, I look at the menus before I go.’
As Kelly’s condition is genetic, she knew that there was a 50/50 possibility that any of her children could have the condition.
She has three sons, who were all tested when they were younger. Her oldest and youngest sons where both diagnosed with the condition.
Now aged eight and four, Kelly says the condition has not affected them much yet but their dad Oliver is a pilot and Kelly finds it difficult knowing that her boys won’t be able to do the same thing because of their eyesight.
She says: ‘At present they have good eyesight but as it is a degenerative condition there is every possibility that it will get worse.
‘They were diagnosed a couple of years ago when my youngest was only 18 months. It was really upsetting to get the news, but we have a positive outlook on life.
‘I try not to dwell on the future, but I have to be realistic that their eyesight will be affected one day.’
Kelly hopes that by talking openly about her condition, she can make people more aware of invisible illnesses and hidden disabilities – and make things easier for her boys in the future.
She explains: ‘Invisible illnesses should be discussed more openly in the media and social media to raise awareness.
‘People who have an invisible illness should also not be ashamed or embarrassed to tell others of their illness and be confident enough to ask for help when it’s needed.’
Kelly is also supported by the Macular Society. You can find out more information online or call them on 0300 3030 111.
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected]
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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