Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Holly's Story'


Dandelion

My name is Holly, I am 22 years old and I live in the UK. I am a disability and lifestyle blogger, hence the name of my blog “Life of a Blind Girl”. I love seeing my friends, going to concerts and interested in beauty, fashion…all the girly stuff.

I have been blind since birth, due to a condition called Retinopathy of Prematurity (ROP for short). I was born at 24 weeks so was very premature, and weighed less than a bag of sugar. There are various stages of ROP but I have stage 5 which is the most severe stage. I have a detached retina in my left eye, meaning that I have no vision in that eye, therefore it is non-functioning. I have light perception in my right eye, that basically means that I can see light and dark.

I am a competent braille reader, I can read standard braille as well as music braille and also French and German braille.

As I have no useful vision, I use a screen-reader both on my phone and computer, I love technology.

Back in 2017, I graduated university with a degree in Children, Young People and Families. I knew that getting a job would be difficult with me being a recent graduate, and also the added factor of me having a visual impairment. I’d done a lot of volunteering in previous years, so had this experience under my belt to try and prove that I was worthy of employing.

During my third year of university, I worked for a few hours a month for a visual impairment charity, so got some more experience of doing so.

When finishing university, I wanted a job with more hours as I’m not the type of person to sit around and do nothing, I had a few interviews but didn’t have any luck getting a job. It’s rather disheartening searching job websites and the majority of jobs not being accessible for you, what frustrated me the most was that I had the skills, but the jobs weren’t accessible.

In October 2017, I applied for a job as an Assistive Technology Officer at the university that I had just graduated from. To my surprise, I got an interview and was offered the job!

I am extremely grateful to have been given the opportunity and I am loving my job so far.

When I was younger, I didn’t really ask for any help from charities or organisations, but as I got older, I wanted to connect with other people with a visual impairment as I didn’t really know any people in my situation in my local area. I joined some Facebook groups and also found some disabled bloggers.

In 2015, I decided to create my own blog, I wanted to have my own little corner of the internet where I could share my experiences and interests and also to tackle the wrongly perceived ideas surrounding blindness/disability. I wanted to be able to inspire, motivate and support others in a similar situation. Life with a disability can be difficult, but it can also be amazing!

As I previously mentioned, my left eye is non-functioning. In 2016, I developed chronic inflammation in that eye which is probably due to scarring from operations that I had when I was a baby to try and stop my retina from detaching. In 2017, I had two operations to try and reduce the inflammation, which I may have to have again in the future.

I am also on 4 different types of eye drops that I have to take daily. It does get quite annoying sometimes, but if they help then I don’t mind.

There are so many tips that I would give to other people with a visual impairment, but if I had to pick one then it would to be to never let your disability or illness hold you back, no matter how hard things may get. We face so many barriers or obstacles because of our disability or illness, but it’s important to not let that stop you from getting to where you want to be in life. Your disability or illness isn’t the only part of you, so prove them wrong and show the world exactly who you are and what you’re capable of!

Holly

If I didn’t have a visual impairment, I know for a fact that I wouldn’t have learnt braille, learnt to touch-type, learnt to use a long cane, I definitely wouldn’t be the person I am today.

It’s given me the chance to meet some of my closest friends, and I know for a fact that if I didn’t have a visual impairment, I wouldn’t have such a wide circle of friends from all across the UK.

If I didn’t have a visual impairment, I most certainly wouldn’t be a blogger. I’d have no reason to tackle the stereotypical notions surrounding blindness and disability, and I most definitely wouldn’t have the opportunity to share my experiences with the world, in order to help others.

Of course, having a disability can be hard. I’m not one to sugar-coat things, I’m the type of person to tell you exactly how it is. My disability does have its negatives and obviously these have an impact on me. For example, I wish I could see the beauty in this world, I wish I could drive rather than relying on someone to take me somewhere or other methods of public transport, I’d like to be able to just travel somewhere new independently without planning in advance and I wish I didn’t have so many hospital appointments.

My disability also had an impact on me at school. I always attended a mainstream school, which I’m extremely proud of myself for doing because it definitely wasn’t easy! It was tiring, more stressful because of my disability, I felt isolated at times and me and my parents had to fight constant battles. These all took their toll on me, but I got on with it and know that I’ll continue to face barriers because of my disability. It’s important to be real, honest and truthful.

I’m not the type of person to let my disability to hold me back, but I do wish that I could drive. I can’t wait for the day we can have driverless cars!

I’d also love to be interested in photography, rather than getting others to take photos for me. As I have no useful vision, this is something that’s not possible for me to do.

I’m at a point in my life where I have a really good group of friends, I’ve got a mix of blind and sighted friends, and I like it that way. In terms of friendships, university was the turning point for me. I finally found a solid group of friends, that understood my disability and accepted me for who I am.

However, things haven’t always been that way, throughout school, friendships were something that I struggled with, I’m not ashamed to admit that. Secondary school was definitely the hardest for friendships, people thought it wasn’t “cool” to hang around with the blind girl, so therefore I struggled to make friends. Don’t get me wrong, I did have friends, but it was a struggle at times.

People always say that I’m so positive about being blind, but I think staying positive is important. Being registered as severely sight impaired (blind) has allowed me to raise awareness, spread positivity and so much more. I’ve been given so many opportunities which I wouldn’t have had if I was fully sighted, so I have a lot to be grateful for. I know for a fact that I wouldn’t be in the job that I’m in today, as it involves specialist knowledge. If you try hard enough, you can usually find a positive.

I’d love for there to be a cure for my condition in the future, but I’m not clinging onto that hope; if it happens then amazing, but if it doesn’t then that’s fine as well. Research is being done all the time so one day, I may be able to see that little bit more.

I’d just like to thank Bethany for letting me share my story with you all

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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