Living With Sight Loss In Your 20s: 'It's Not The Only Thing That Defines Us'

From nights out and dating to job-hunting, three women share their experiences.

Your early 20s are some of the most transformative years of your life: you might be living it up at university, moving out of the family home or swapping a casual Saturday job for a full-blown career. You’re discovering who you are as an adult – so imagine doing all that while losing your eyesight.

Chloe Tear, 21, from Leeds, began to lose her vision at the age of 18, but has only recently been registered as partially sighted. The university student has cerebral palsy, and her eyesight has been steadily deteriorating to the point where she has very little peripheral vision – everything over a metre and a half away is a “complete blur”. Tear uses a cane and reads and writes in size 20 font to blog and complete her university assignments.

“Going through it in your 20s is scary”

“I’d gotten into uni, I was doing my course, everything was great – and then I became registered as partially sighted between my first and second year of uni,” Tear tells HuffPost UK.

“Going through that in your 20s is scary,” she adds. “You need support and you need people to try to understand. I think people forget the age that you are.”

There are no bits of student life Tear can’t participate in, but she does have to plan judiciously for accessibility – it’s not a case of going to the nightclub with the shortest queue or best deals. “Nightclubs are interesting because I can’t see very well in the dark,” she says, adding that she has great friends she trusts to keep her safe.

Chloe Tear
Chloe Tear

Public reaction to her disability is mixed, but has become easier as she’s got older. One common misconception is that people incorrectly assume she can’t see at all when she’s using a cane – and are confused when she switches this to a walking stick on days her cerebral palsy symptoms are more pronounced.

“I need both, but I can’t co-ordinate both at the same time,” she says. “Friends full-on joke (and I’ll be the first one to get on board with it), saying ‘oh, so you’re having a blind day today?’ – but tomorrow I might not be. I think having the added multiple disabilities makes it even more complex and probably harder for people to understand.”

“You’ve got to plan everything in advance”

For Holly Tuke, 23, nights out are also one of the most challenging aspects of sight loss. She can see light and dark but, in her words, has “no useful vision”. Tuke, who has a condition called retinopathy of prematurity, has been registered blind her whole life – but says her 20s brought new challenges.

“If you go on a night out and it’s loud, friends will be lipreading, but obviously I can’t do that,” Tuke, from Yorkshire, tells HuffPost UK. “You’ve got to plan where to go in advance and think about whether it’s accessible. You’ve got to think: is my visual impairment going to get in the way?”

Holly Tuke
Holly Tuke

Job-hunting after graduation was particularly stressful, because there were so many jobs she couldn’t apply for. She uses a screen reader, which reads out text posted online, but the devices can’t always decipher words in text boxes, meaning many application forms are inaccessible.

“Often, employers don’t understand what it’s like to be a person with a visual impairment – they think you can’t work or you can’t succeed because you’re blind, but obviously that’s not the case,” Tuke says. Dating, too, can be a challenge – “people just go on an app now, but I can’t see people like that.”

Tuke also blogs about her experiences in the hope she can break down some common misconceptions about sight loss. “We are so much more than our visual impairment. Sure, it shapes certain aspects of our life, but it’s not the only thing that identifies us,” she says.

“It makes me feel quite vulnerable”

Elin Williams, 20, from north Wales, has had limited vision since she was 12 – she can see shapes, colours and differences in light but little else, due to the condition retinitis rigmentosa, which she blogs about.

Unlike Tear and Tuke, she tends to avoid loud bars and clubs as she doesn’t like being in a situation where she can’t see well. Instead, the Open University student doggedly seeks out accessible gigs because she loves live music – she previously sent emails back and forth to a venue for six weeks to check she’d be able to enjoy the show. “A lot of websites for concerts don’t have the accessibility information online, which is a barrier itself,” she says, adding that arriving at the venue can be the biggest challenge.

“I’ve never been one for big crowds, it makes me feel quite anxious, but once I get to my seat I can relax, because I’m there to listen to the artist and that’s what’s most important to me.”

Getting ready for a gig, with a new outfit or makeup, is part of the fun – but people frequently question her interest in fashion and beauty, with one even asking: “Why do you care about fashion when you’re blind?”

“It’s frustrating,” she says. “People don’t understand why we want to put an effort into the way we look, just because we can’t see it for ourselves. It’s something that we can still enjoy and have a passion for.”

Williams and Tuke both choose outfits by touch and put braille stickers on makeup products that feel similar. Counting also helps during application: “If I’m doing eye shadow I’ll dip the brush into the product two times and swipe it across each eyelid three times, so I know I’ve applied the same amount of product – or at least a similar amount – onto both sides,” Williams explains.

Despite engineering individual workarounds for day-to-day challenges, there are times when accessibility is taken out of her hands. For Williams, poor transport can really take its toll. “If I want to go on a train I have to book assistance 24 hours in advance, so it feels like I’m constantly planning what I want to do instead of being able to just go off and do it,” she says.

All three women blog about their experiences of sight loss because they want to improve public awareness. “I think it’s important for people to see the person, not the disability,” Williams says.

“Sight loss doesn’t always have to be a barrier and it’s possible to be successful and to be happy and independent even if you do live with it.”

Chloe Tear, Holly Tuke and Elin Williams are supporting the Royal National Institute of Blind People. Find out more about the charity’s work here.