• The reality of losing sight
  • The reality of losing sight

    I often talk about the positives of being vision impaired here on my blog and that’s because i like to think that I am quite a positive person. I believe that it’s important to approach life in a positive way despite living with a disability but of course, that’s not always possible.

    Positivity isn’t the easiest of things to maintain and I know that it’s important not to let that positive mindset over rule the realities and what life is really like. It gets hard sometimes but I try not to dwell or think about that too much.

    On the other hand, I’ve always said that I don’t like to sugarcoat anything and try to be as open and honest as possible both on and offline.

    With this in mind, I decided that today I would share with you what losing sight is really like from my perspective. Please note that I’m talking about my own personal experience(s) and I am in no way talking on behalf of anyone else who has a vision impairment because everyone’s experiences are different and I don’t want to generalise anything.

    This is my reality.

    I started losing my eyesight at the age of three. This is something I’ve mentioned many a times before on my blog so if you’ve been reading my posts for a while, you’ll know the background and the story of my journey but here’s incase you don’t.

    My parents realised that I couldn’t see very well in the dark as I said when I was three, night blindness is one of the most common symptoms when it comes to Retinitis Pigmentosa which is the condition I live with. It took three years before I was finally diagnosed with the condition which affects 1 in 3,000 to 4,000 people so it seems.

    When I was first diagnosed, I was registered as being partially sighted but as time went on and as my vision gradually deteriorated, I was registered blind/severely sight impaired in 2010 when I was 12.

    My vision has deteriorated even more since being registered blind, it tends to fluctuate from time to time meaning I have good and bad days but the ‘good days’ are now very rare as I notice the deterioration in my vision everyday which I can’t describe as being anything else but daunting.

    Living with RP has resulted in me having to make adjustments to my life in order for me to live it as normal as possible, whatever normal may be.

    Growing up with deteriorating eyesight hasn’t been the easiest of things to do as you can imagine but I’ve been able to make those changes and achieve things such as good GCSE and A Level grades which I’m very proud of.

    I attended mainstream school which was something I always wanted to do and I’m so glad that I did as it gave me the opportunity to become more determined to cope with my disability.

    Although I try to focus on the positives, I can’t deny that living with sight loss can make me feel down at times especially recently as I seem to notice the deterioration in my vision in a way I’ve never done before.

    Another symptom of my condition is vision black outs meaning that my sight is completely lost for about a minute or so which as I’m sure you can imagine is very frightening.

    These black outs can be very frequent on some days whilst not on others. They can be extremely frightening since it triggers a thought in my mind which causes me to wonder if my vision will ever come back after one of the blackouts happen.

    The reality of losing sight: A photo of Elin sitting on a bench in front of the river

    Losing sight as a teenager has proven to be very difficult for me, it can be quite frustrating at times as I have to make adjustments to my life when other people my age wouldn’t have to do so.

    I can’t go to unfamiliar places independently since I wouldn’t know the surroundings, I’d be like lost puppy as I wouldn’t be able to see where I was going.

    It’s rare that I could walk around town without having to use my cane or depending on someone else to give me sighted guide. I think these are often things that a fully sighted person would take for granted as it’s not something they have to think about.

    For me, living with sight loss can be very exhausting.

    It’s tiring in the sense that I have to concentrate more to see something and it feels like there’s constantly something to do with regards to my disability, whether that be a hospital appointment that needs to be attended or a form that needs to be filled in to receive the support I need.

    So, what is the reality of losing sight?

    As I said before, there’s one word to describe it – daunting.

    For me, it’s the fear of the unknown, not knowing how long my remaining sight will last, not knowing how many black outs I’ll have in a day and not being able to control that and not knowing how I’ll feel about losing my sight in the future, how it will affect my emotions and my mental health.

    Although I try to stay as positive as possible and I try not to let my vision impairment define me, who I am and how I live my life, it’s not always the easiest of things to conquer.

    I will always try my best to maintain a positive outlook on life, positivity is how I deal with things and I’m proud of the fact that I can be positive when it comes to my sight loss despite it being difficult sometimes.

    I have a great supporting network around me in terms of family and friends and that also helps me through the reality that I’m losing a little of my remaining eyesight everyday,

    I’m so grateful for the support I have that surrounds me and that I can talk to any one of those people if I’m finding it difficult.

    Blogging about my experiences also helps in a way I never imagined it to, it enables me to engage with others in a similar situation and realise that I’m not alone.

    Living with sight loss can be isolating, it can be frightening and everything else in between but as long as you can find a way to accept it and realise that there are others out there who are in a similar situation, you’ll soon realise that’s a feeling of relief and it’s a battle that no one has to face alone.

    If you are living with sight loss, if you’re going through the process of losing your vision or if you have already lost it, please feel free to share your experiences and thoughts in the comments as I would love to hear from you.

    I want my blog to be a platformย for everyone to share their thoughts and for us to come together and support each other.

    Elin x



    1. Lynne Nicholson UK
      September 29, 2017 / 7:40 pm

      Hi. Yesterday was a year since my sightloss condition was diagnosed. I’ve only recently (3 months ago) got my wand of power (white cane). I’ve lost all useable vision in my left eye (I have a small periphery of blurred colours but cannot see letters on my iPad keyboard) my better vision is in my right eye where I can see the letters on my iPad keyboard if I hold my iPad four inches from my eye the world gets extremely blurry so people are featureless four feet from me.
      I’m almost 56 and feel extremely blessed this has happened now when technology (cameras on phone and iPad) can help me see my grandson playing. I feel the need to find out how to use the tech totally blind as that is a possibility in the future but so far I’m staying as independent as possible.

      • September 30, 2017 / 9:07 am

        Thank you for sharing your story with me, it sounds like you’re doing great in terms of independence and it’s great that you’re trying to maintain that. I agree that technology is so advanced these days, it would be much harder if it wasn’t so good and it’s only getting better in my opinion.

        • Lynne Nicholson UK
          September 30, 2017 / 10:08 am

          Yes of course technology can be frustrating as new update on iPad has changed part of how it operates. Mind you closing windows has got easier. I will learn the rest just in time for the next change ๐Ÿ˜‰

          • September 30, 2017 / 10:50 am

            Yeah I find that quite frustrating with updates aswell, it always takes time to get used to. I need to update all my ipad and phone soon so we’ll have to see how that goes haha.

    2. September 29, 2017 / 8:23 pm

      Hi just wanted to say what a fab post! I have optic nerve head drusen since I was 4 – very crowded discs but other than slightly reduces visual fields didn’t really effect me until 12 months ago. Now my right eye doesn’t have a lot of sight left and I notice a difference everyday. Both eyes blur out regularly throughout the day. Left eye is playing catch up ๐Ÿ˜‚ I know what it is like constantly feeling changes. So nice to hear someone else with optic disc drusen (in the nicest possible way) I am now registered partially sighted and a long cane user. Don’t think it will be long until registered blind. I try to stay positive but it isn’t always easy – was thinking of blogging ๐Ÿ˜‰๐Ÿ˜Š Anyway I’ve rambled on enough!!!

      Thank you

      • September 30, 2017 / 9:11 am

        Thank you! I agree, it’s great to find others who have the same condition so you have someone to relate to. Thank you for sharing your experiences with me. If you want to start blogging then go for it, I think it’s a great idea and you have nothing to lose. It’s a great way of expressing your feelings, sharing your experiences and meeting other people in similar situations. Thank you for reading ๐Ÿ™‚

    3. September 30, 2017 / 6:20 am

      I am amazed at how strong you are everyday! You conquer the odds daily just by being the very special person you are! Having a blog is such a good thing to do because you can share your story with so many people all over the world! And congrats on 1,000 followers! ๐Ÿ™‚
      ~ Megan Joy

      • September 30, 2017 / 9:13 am

        Thank you so much, that means a lot! I agree, blogging is such an amazing thing. Thank you for reading ๐Ÿ™‚

    4. September 30, 2017 / 10:40 am

      I’m so sorry that you were diagnosed again and now are having blackouts to! It sounds really scary and you are so strong for going through it. Thank you for sharing xx

      • September 30, 2017 / 10:52 am

        Thank you Najida and thank you for reading as always xx

    5. September 30, 2017 / 12:51 pm

      I find you to be immensely brave, both in your positive outlook and your willingness to share the struggles of RP. I also have RP and although my story is different from yours and started later in my life, I can absolutely relate to the feelings of isolation and the daunting aspects of the unknown that is life with RP. You are definitely not alone; we are a vast community that can now connect in so many ways. I thank you for your honesty and your courage and I hope that you will also feel free to connect with me and other RP bloggers if you need support. Please keep writing.

      • September 30, 2017 / 2:11 pm

        Thank you, that means a lot. I agree, it’s a very strong community nowadays and I’ll definitely reach out if I feel like I need someone to talk to. Thank you for reading.

    6. September 30, 2017 / 5:12 pm

      Such an important and honest post! I know how hard it can be when you experience changes but well done to you for writing about it. Loved reading as always xxx

    7. April 1, 2018 / 8:35 pm

      Thank you for sharing. It took great courage. It means a lot to many of us. I have learned to deal with a rare form of progressive MS, and your sharing is like talking about this current change with a peer.

      • myblurredworld@gmail.com
        April 1, 2018 / 11:02 pm

        Thanks George. I think itโ€™s important to share experiences like this as there will always be someone who can relate in some way.

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