• Things I wish I’d known when growing up with sight loss
  • Things I wish I’d known when growing up with sight loss

    I started losing my sight when I was 3 years old, meaning I’ve been living with sight loss for nearly 17 years now, how time flies, eh? When I was younger, I didn’t always understand the concept of vision impairment, I didn’t always understand what it meant for me and a lot of the time it left me feeling confused, isolated and different to everyone else around me.

    Growing up, my family would always reassure me, making sure I knew that the fact that I couldn’t see like everyone else didn’t mean that I was any less of a person. But, I didn’t always find it easy to find that reassurance for myself.

    A photo of Elin leaning on a bridge, wearing a white t-shirt with red embroidered flowers on the neckline, a paperbag skirt and small red handbag with gold ring detail and white slip on shoes

    I know that I’m only 19 so I still have a fair bit of growing up to do and there’s no doubt that I still have plenty of things to learn. But I’ve been thinking recently about some of the things I wish I could have told myself when growing up with sight loss or things that I wish I would’ve understood a little earlier. As I said before, I often felt isolated when growing up with sight loss, I didn’t speak to others who were in a similar situation to myself and there are many things that I wish I had known that would’ve put my mind at rest when growing up with a vision impairment.

    I’m hoping that some people who might be of a similar age to me or maybe younger can take something away from this post and realise that they’re not alone.

     Living with sight loss doesn’t make me a problem

    My family never made me feel like I was a problem, they never reminded me of my disability, I’ve always been normal to them. My brother and I have grown up going on bike rides, having ridiculous wrestling fights and having random conversations about life, the things we’d do whether I had a vision impairment or not. But the fact that I did all the things that were considered to be normal for other people my age at the time and although I was never made to feel like a problem by my family and friends, I couldn’t help but feel like I was at times. There have been a number of times over the years when I’ve felt bad for asking my parents to take me somewhere or when asking them or my brother to help me find something because I can’t see where it might be. There have been times when I’ve felt like I was a problem when I’ve walked into or tripped over someone. I’ve had a bad reaction to my vision impairment on more than one occcasion, times when I’ve felt like I didn’t belong somewhere because of it. I’ve grown to realise that this is not at all true but I wish I’d known it sooner because I would’ve saved myself from a lot of heartache.

    It won’t be confusing forever

    It’s safe to say that I was a very confused child at times, I didn’t understand why my sight kept fluctuating from day-to-day, there were times when I didn’t understand why I had to get work produced in different formats. I remember the first time I learned the name of my eye condition, it’s such a vivid memory in my mind for some reason. It was a few years after I was diagnosed and I remember wanting to learn it because I was often asked what was wrong with me and why I couldn’t see certain things. I remember being sat on the stairs and hearing my mum say the words Retinitis Pigmentosa, explaining to me how it was pronounced and me coming up with quirky little ways of remembering it. Learning the name of my condition helped me in terms of taking a little of that confusion away, it was as if I needed to know the name of the condition in order to better understand it. I remember feeling so confused by what was happening and I thought that confusion would last forever, something I later realised wasn’t true.

    It’s hard to overcome but not impossible

    My younger self didn’t always understand that sight loss was not the end of the world. Yes, it’s difficult to live with at times and yes, it can be frustrating and isolating but for me, it’s not something that I want my life to be defined by. There have been so many occasions over the years when I’ve felt like I couldn’t overcome the fact that I was losing my eyesight, times when I felt like it was impossible to look past it and those times brought a lot of negativity into my life. I wish I could have realised sooner that sight loss is not impossible to overcome, I wish I’d known that there are some positives to be taken away from it.

    A portrait photo of Elin

    Sometimes, people just don’t know what to say

    When I was younger, there were many people, whether it be in school or other social happenings, who didn’t acknowledge me in any way and it made me feel incredibly isolated. I managed to convince myself that some people just didn’t want to make an effort or be friends with someone who couldn’t see. I believed this for so long but when looking back now, I wish I didn’t waste time on that mindset. As I’ve grown up, I’ve learned that sometimes, it’s not a matter of whether someone wants to make an effort or not, some people might really want to but they don’t know how. There is so much awkwardness surrounding disability due to the stigmas that surround it and I think that this can often influence how people react to it.

    Sight loss is not a weakness

    When I was starting out in my teenage years, I often considered my vision impairment to be a weakness. I guess the reason why I thought this was because I had to have extra support in school for example. Although I still feel like it’s a weakness at times, I’ve grown to learn that it also comes along with many strengths. Although there are many cons to it which can contribute to that feeling of weakness sometimes, there are also many pros and that’s what I try my best to focus on.

    Everything will be ok

    Although the people closest to me have always preached the fact that everything will be ok, it’s not something I’ve always believed for myself, when I was younger anyway. It’s now something I tell myself most days and I always tell it to others who might be going through a difficult time aswell, I don’t say or think it just for the sake of it, I say it because I’ve been through difficult times and come out on the other side therefore I know it’s true. Although things might be hard now, it won’t stay like that forever and that’s something I’ve learned to tell myself, I always have that saying in the back of my mind now. Bad and difficult times happen to all of us but there’s not one person that I know that hasn’t been able to come out stronger on the other side. I think I could have avoided a lot of heartache if I learned to tell myself this sooner and although this saying can’t fix everything, it can’t make everything better, it’s comforting to hear it from others and I think it’s even more important to acknnowledge it and believe it for yourself, everything will be ok.

    A photo of Elin from the side, wearing a white t-shirt with red embroidered flowers on the neckline, a paperbag skirt and small red handbag with gold ring detail

    Even though these are things I wish I’d known sooner when it comes to living with sight loss, I’m glad that I’ve been able to learn them over the past couple of years. In a way, it makes the process of accepting and understanding my vision impairment so much easier.

    Sight loss comes along with an endless amount of challenges sometimes but challenges are meant to be overcome. Although it can still be hard at times, I’m so glad that I’ve been able to realise all of the above quite early on, they’re now things that I bare in mind every time I find something to be difficult, they’re a form of comfort in a way.

    What are some of the things you wish you’d known when growing up, with a disability or not? I’d love to know if some of you can relate to some of the things I said in this post.

    Elin x

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    12 Comments

    1. July 2, 2018 / 10:06 am

      Elin your blogs are so full of hope and positivity, you are a wonderful role model. I work for the Wilberforce Trust and we support people living with sight loss and hearing loss. I’d be delighted if you would agree to become an Ambassador for the charity. This only involves letting us use your name and image and giving us a quote. We are just about to revamp our website and we are really keen to get more young people interested in our work as we cater to all ages. Our current image is a bit uninspiring but we are working with a new design company so don’t judge us on the current image!

      My email is J.carter@wilberforcetrust.org.uk

      • myblurredworld@gmail.com
        Author
        July 3, 2018 / 9:36 am

        Thank you so much Jane, that means a lot! I’ll send you an email later today or if you’d like to email me, mine is: myblurredworld@gmail.com 🙂

    2. July 2, 2018 / 4:02 pm

      Such a heartfelt, personal post which I’m sure will help many people. So proud of you for overcoming all of the negative thoughts and mindsets and becoming the incredible, strong person you are today xxx

      • myblurredworld@gmail.com
        Author
        July 3, 2018 / 9:31 am

        Thank you so much my lovely xxx

    3. July 2, 2018 / 7:06 pm

      What an inspiring piece Elin!! Its amazing how mature you are for your age, I wish I had the knowledge you have now when I was 20, because you present yourself so graciously and I really admire that about you! I can’t say that for alot of 20 year olds Haha. But this post is so perfectly written, and I admire your writing style. You’re always so positive no matter the situation and it seems as though you come out a stronger person. If the younger Elin could see you now, she’d be incredibly proud of who she’s going to turn out to be.

      • myblurredworld@gmail.com
        Author
        July 3, 2018 / 9:30 am

        This was so lovely to read! Thank you so much Kayla, that honestly means the world! Thank you for reading as always 🙂 x

    4. July 3, 2018 / 10:43 pm

      You are a remarkable young woman, whom is head strong and very positive. Your positively will take you far. A little kindness from people makes the world go round. I wish years ago I learnt not to over think things… i’m 34 and still learning. Great post Elin : ) xo

      http://www.juanitalikes.com

      • myblurredworld@gmail.com
        Author
        July 4, 2018 / 10:11 am

        Thank you so much Natoya, this really means a lot. Thank you for reading as always 🙂 xx

    5. July 4, 2018 / 10:28 am

      You are such an inspiring young lady, the things that happen to you can sometimes change your outlook on the world for better/worse and it’s always easier to be annoyed at the situation, but you are so positive and you’re right – you’re not a problem and everything will be ok. There’s actually a Youtuber who is fully blind and she is so inspiring to watch and has such a positive outlook on life. Thanks for sharing chick! xx

      G

      https://www.teawithgi.com

      • myblurredworld@gmail.com
        Author
        July 4, 2018 / 5:43 pm

        Aww thank you so much Giana, that really means a lot!xx

    6. July 8, 2018 / 6:29 pm

      You’re such an inspiration! I read your post slowly and I loved it. I haven’t had the chance to know anyone with vision impairment but I did always wonder how they felt. Mostly because I’m this person who keeps imagining how situations could go wrong and how I would manage. I like to be prepared and sometimes thinking about how I’d handle situations makes me calm down. Naturally I’ll have a lot of questions about many things.

      And hence I’m normally curious and I’m pretty sure I wouldn’t have approached you (if I knew you) first because my curiosity might make me seem rude. But I did get to know a lot of things from this post. So thank you!

      • myblurredworld@gmail.com
        Author
        July 8, 2018 / 8:19 pm

        Thank you so much! I’m really glad you were able to learn something from this post. I think it’s natural for many people to have questions about things they don’t come across in their day-to-day life and that’s why I try to make my blog as educational as possible by still trying to keep it entertaining! Thank you for reading 🙂

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