Feeling confident in disclosing or talking about my vision impairment was a prospect I could never truly identify with when I was younger. I tried my best to be as open as I could in terms of how Retinitis Pigmentosa was impacting my life, and what support I’d need in lieu of that to navigate this ever sighted world, but the prospect of addressing the topic terrified me more often than it should have.
I could be on the presuppose of sharing a detail, a thought or a worry, but a sudden wave of anxiety about opening up, or the reaction I’d receive, would wash the words away, deeming me silent once more.
Now, a good few years down the line, I can say that things have changed – I have five and a half years worth of blog posts about living as a vision impaired person to prove it. But how did I get there?
Well, that’s exactly what I want to talk through today because so many people have reached out to me over the past few years, sharing the same sentiments and illustrating the fact that they have or do lack confidence in terms of talking about their impairment, and I know from personal experience that it can help massively to know that you’re not the only one. I think my parents could have benefited from knowing that the feelings I had were natural too in order to ease some of their own concerns.
Support from my loved ones
Speaking of my parents, this seems to be a good a place to start as any.
I’m lucky in the sense that my family and friends have provided me with unwavering support over the years. My parents have admitted that it wasn’t easy to witness my reservations and lack of confidence, both in terms of socialising and in the respect of opening up about my vision impairment but some gentle encouragement by them sure did help me along the way.
I think it’s important to provide that reassurance and assert the fact that we’re all in this together. Being vision impaired can be a lonely experience at times which might contribute to lack of confidence, so knowing that you have a support network around you can make all the difference.
Talking to others in a similar situation
For me, this reassurance has also come in the form of conversations with others in a similar situation, and the friendships that have been born from those connections.
I was very reluctant to connect with others in a similar situation when I was a little one since it seemed to make everything more real for me at the time, and a part of me didn’t want to admit the reality of the situation to myself. But I’ve grown to realise how beneficial it can be to chat to others who are in the same boat. Those people understand where you’re coming from in a way that those without the same life experience could never fully comprehend, despite their best efforts to.
Having those conversations and learning about how others go about talking about their own vision impairments has definitely helped me in terms of identifying the best ways of sharing my own thoughts, worries and experiences. I’m forever encouraging others to connect with people in a similar situation to themselves now, it can be just the boost you need.
Discovering a way to channel my thoughts was one of the biggest turning points for me. I’ve always been a writer of sorts so the passion has always been there, but when I started noting my thoughts and feelings relating to sight loss down aged twelve, that was the lightbulb moment that helped me to realise that some of the weight could be lifted from my shoulders purely through writing about how I felt.
These personal musings evolved into the creation of my blog, My Blurred World, a few years later and, whilst it was daunting to share such a personal aspect of my life online to begin with, it led me to so many other people in a similar situation and I really do think that writing about my experience of living with RP has bolstered my confidence in talking about it offline too. My family and friends have echoed this over the past couple of years which goes to show that progress has been made.
Blogging has also aided my confidence in other ways too, it has surprisingly garnered media attention over the years, leading me to agree to a few TV and radio interviews. Now, speaking about my experiences in this sense is much more nerve-racking than through my blog, let me tell you, but I think it has definitely helped me to identify the best and most comfortable way of narrating my story. There are days when I don’t want to comb through the details, but I can say that I’ll happily witter on about my experiences when someone wants to know something, within reason, of course.
That, quite frankly, is a sentence I never thought I’d say. Oh, how things change.
Working in the charity sector
When my time at sixth form was done and dusted, I was lucky in the sense that I knew I had a job to hop into after a little break over the summer. It was a trainee role with a sight loss charity for the next year, a position which afforded me the opportunity to learn so much about the sight loss sector and the people charities support.
My eyes were opened to different people’s experiences and perspectives, and working with those people boosted my confidence. Not only did I grow in confidence in terms of delivering services but I also learned so much in terms of how others talked about their own vision impairments, how they asked for support and advice and many more things that I could then apply to my own approach.
This has been a continuous pattern throughout other roles I’ve had in the charity sector since then, it can honestly be such a rich landscape in terms of lessons, support and advice you can take away from it.
I’ve talked about acceptance over on my own blog more times than I can count, but I do think that it’s one of the key aspects of my confidence building.
When I was younger, I didn’t necessarily understand my vision impairment and everything it would entail for me and my life. I found it difficult to accept the fact that the way I saw the world was continuously changing and therefore, explaining that to others when I didn’t fully understand it myself proved challenging.
But, over the years, the pieces to this mammoth and confusing puzzle have started to fall into place and, with that, I’ve learned to accept many aspects of my impairment.
I can’t sit here and claim that I’ve fully accepted every facet of life with sight loss, but I can say that I feel all the more confident after becoming more comfortable with some aspects of it.
Taking one step at a time
I can imagine that this has been the motto for many of us throughout the course of 2020, but it’s something I’ve always applied to the way I live my life.
It’s not always possible, but I try my best to take every day as it comes. When living with a deteriorating eye condition, there’s no telling what things are going to be like from one day to the next, so I find it easier to focus on the here and now.
It’s easier said than done sometimes but there are going to be good days, and there are going to be bad ones in contrast, but one bad day isn’t going to determine what the next will bring.
This is a journey and everything happens in stages, at different times, I think that has been one of the biggest take always for me throughout my sight loss journey and sometimes, I feel all the more confident in reaffirming that to myself.
Different things work for different people so it’s all about pinpointing the most helpful factor for you personally, and utilising that until your heart’s content.
I think that confidence will forever be a work in progress, for me at least. But these are just some of the things that have helped me to grow over the past few years. It’s not always easy, but finding things that lift you up along the way can make all the difference so take and celebrate any win, no matter how big or small, wherever you can. Sometimes, they can be found in the most surprising of places.