When you’re diagnosed with sight loss or when you hear or realise that you’re eyesight is deteriorating further, finding acceptance is difficult, no person living with a vision impairment needs me to tell them that.
This year marks 15 years since I was diagnosed with Retinitis Pigmentosa and 9 years since I was registered blind/severely sight impaired, where did all that time go?
I’m sure I sound like a broken record to many of you, constantly combing through these dates and harping on about the challenges that have come hand-in-hand with sight loss over the last few years but I’m hoping some of what I’ve got to say helps to educate or help you in some way.
Since we’re coming up to RP awareness month in February, I wanted to take a little time to talk you through my sight loss acceptance journey.
From being in denial that it was all happening to feeling angry towards my disability because of the things it was bringing to my life, I have definitely gone through the motions when the road to acceptance is concerned and it took me a while to understand that these feelings were normal and ok.
So, as a tribute to all those feelings I’ve felt over the years, I thought I’d jot them down in a post for you in the hope that some can relate or that it can help others who are in the process of accepting sight loss to understand that they’re not alone.
The road to acceptance and working towards a more positive approach to my disability.
GRIEF
I’ve definitely had my fair share of grieving moments over the years and it’s completely normal to grieve for a sense that some couldn’t imagine their life without.
I’ve never had perfect eyesight, or at least I don’t remember a time when I did but I have lost a considerable amount of vision over the last few years and I find myself missing a time when I could see my friends and family’s faces clearly, a point when I could read print, go out to get stuck in helping on the farm and so many more things that I can no longer do.
Feeling these emotions and experiencing these moments of grief are completely normal and I’ve come much better at expressing them as I’ve grown up.
Realising that I need to express my grief is something that has helped me in so many ways and there’s absolutely nothing wrong with showing it.
Scream into a pillow, cry until you feel like you have no tears left to cry, do whatever it is you need to do to grieve.
It’s ok to cry, it’s ok to feel confused, it’s ok to grieve for the sight you’re losing, it’s a natural process which takes time.
ANGER
Anger comes quite naturally with grief. I’ve definitely felt angry and frustrated because of my vision impairment and sometimes I still do.
Questions like ‘why me?’, ‘why now?’, ‘why does it keep getting worse?’ are ones I’ve asked myself more than once, as if I’m searching for answers to make the unwelcome changes better but of course, they’re often left unanswered.
I feel like, over time, the anger I used to feel so gravely has simmered down, I’ve found ways of dealing with my disability, focusing on the positives and finding ways of moving forward but it hasn’t always been so simple and I think it was an important stage in my acceptance process, an emotion that is only natural for everyone to feel when going through something like this.
FEAR
When people used to ask me what my biggest fear was, I wouldn’t reply with your typical heights or spiders. My response would always be ‘losing my eyesight completely’.
Some thought that was quite deep for an 11-year-old but it was my reality and something I used to be terrified of.
This feeling of fear used to be much more prominent, especially when I was first registered blind but it seemed to slip further to the back of my mind over the years and as I’ve become more comfortable with my disability, maybe spiders has overruled it now, but it was still a tough hurdle to overcome in my journey to acceptance.
LEARNING
Learning about my vision impairment, not only about the ways it affects my life and the ways I can navigate the challenges it brought to my door but also learning from others is something that I’ve found is a big part of the acceptance process.
I used to feel quite oblivious to how sight loss could affect my life in the future and I wasn’t always prepared to learn about other people’s stories and experiences, I guess this was relevant to being in denial that it was all happening.
But since starting my blog and reading about other people’s experiences, I’ve learned so much about sight loss.
Receiving information about how people find different ways of coping and adapting has helped me to find my own acceptance.
I think it’s important to learn about what adaptions you can make in order to make things more accessible, what support you need from others and also what things have benefited other people.
Learning about these things can take a lot of weight off your shoulders, never underestimate the power of learning what you need to make things easier for you.
Finding the positives
Once I started to learn more about my vision impairment, I also began to learn the importance of finding a positive in a negative situation.
Yes, they can be a little tricky to find and you might have to dig quite deep sometimes but you will find those little treasures to focus on eventually.
For me, the positive things thats sight loss brings into my life include the amazing people it’s allowed me to meet, the opportunity to write my blog and hopefully help and educate others and also the fact that it gives me unique skills like using the cane and reading/writing braille.
The cane didn’t used to be a positive and I still have a love/hate relationship with it but I’ve learned that it’s all about focusing on those positives and grabbing hold of them, sometimes very tightly, when the negatives are quite prominent.
All these emotions are part of a process and whilst that process takes a different amount of time for different people, it is possible to overcome.
Everyone’s journey to acceptance takes a different amount of time and of course people find different ways of adapting.
Acceptance doesn’t mean complete happiness, it doesn’t result in all sunshine and rainbows but it does make it easier to face challenges and adopting a more positive approach to life with sight loss.
There was a point when I didn’t believe I’d ever find acceptance, I’ve felt defeated more than once when those challenges have come knocking but I believe that going through all these stages towards the road to acceptance has help to make me stronger.
No matter how you feel towards your disability at the moment, your feelings are valid and if you’re not ready to accept just quite yet, that’s ok, take your time and feel whatever it is you need to feel.
If you’re struggling right now, please know that it does get better. You are stronger than you know.
Everyone has different coping mechanisms, different ways of adapting and adjusting, I’d love to know what has helped you to find acceptance regarding disability or any other aspect of your life. What have been the most prominent stages in your journey to acceptance?
Elin x
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The Comments
Angie Kirchoff
I love your blog! I also have RP, I have had it for 33 years and are just getting to the point where I need a cane. My RP was very slow progressing. I went through all of your steps of grieving but realized I had so much to give! I have been so blessed and I know others learn from my spunky nature, God is not finished with me yet as long as they allow him to use me to influence others. Blessings!
myblurredworld@gmail.com
Angie KirchoffThank you so much Angie, I’m really glad you like my blog! It’s great to hear from someone else who has RP as well. It’s good that others can learn from you and your experiences, the more awareness that is raised, the better! Thank you for reading.
Louise
Brave young lady. Finding positives from the really hard negatives is very commendable. Elin is a shining light for those youngsters coming to terms with their sight loss.
myblurredworld@gmail.com
LouiseThank you so much, this means a lot!
Jane Carter
You really are an inspiration Elin, – You should do a TED talk about this, it would really help other people who are struggling with a VI or other disability
myblurredworld@gmail.com
Jane CarterThank you so much Jane, this means a lot. Maybe one day!
Holly
This is such a brilliant post lovely, I’m sure it’ll help many people that are going through the journey of acceptance with their sight loss or that have recently been diagnosed with a vision impairment. So proud of how far you’ve come xxx
Natoya
A very honest post Elin. A lot of positive here. All the stages you have gone through are, like you said natural. You have so much to experience in this life. Good job Elin and have a great weekend : ) xo
Bexa
You are such an inspirational lady, Elin. I love that you have such a positive attitude and are using your experiences as a way to educate others. I always learn so much reading your posts and I am sure your journey will help, reassure and bring comfort to many others in a similar situation. Well done, keep up the fantastic work! Your blog is such a positive place <3 xx
Bexa | http://www.hellobexa.com
myblurredworld@gmail.com
BexaThank you so much Bexa, that means the world! I’m really glad that you can learn a little something from my posts, that’s one of the main reasons I write so I’m glad that it’s paying off. You’re always so lovely, thank you so much for reading as always <3 xx
Kate
Just stumbled across your blog and found this really educational as it’s something I know nothing about. I think it’s fantastic that you’re writing about your experiences here as I’m sure it will be tremendously helpful to others going through the same thing. x
Kate Louise Blogs
myblurredworld@gmail.com
KateThank you so much, I’m really glad my posts can help to educate in some way. Thank you for reading!x
roseline
Stay strong and don’t give up because you are not alone. I was born disabled but I always try to be strong even though many people insulted my face.
Would you like to follow each other? If the answer is yes, please follow me on my blog & I’ll follow you back.
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myblurredworld@gmail.com
roselineThank you, the same goes for you! I’ll definitely have a read of your blog.
Kayla Pettigrew
What a great post! Grief I feel is the most important emotion to face, because you really are losing a piece of you that unfortunately will never return, and in order to move past it, is to face. You’re so strong girl, its incredible. So positive and inspiring!
myblurredworld@gmail.com
Kayla PettigrewI couldn’t agree more. Thank you so much lovely, that means a lot!
To parents and families of vision impaired children - My Blurred World
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