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

I started losing my eyesight 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; My condition, Retinitis Pigmentosa (RP), was difficult to comprehend in its entirety, and it often left me feeling confused, isolated and, dare I say it? “Different”.

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

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 recently been thinking about some of the things I wish I could have told myself when growing up, or things I wish I could have understood a little earlier. Thoughts that have sparked the idea for this post.

Loneliness and isolation were constant features of my life when growing up, much of this came down to the fact I didn’t necessarily know that there was a whole community of people out there who were feeling and experiencing similar things to me.

This is just one of the things I wish I had known in order to ease some of the isolation I felt so acutely in different moments of my life. But, what else could I have benefited from hearing? Let’s talk through exactly that.

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.

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

 Being vision impaired doesn’t make me a Burden

My family never made me feel like I was a problem, they never reminded me of my impairment; 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, doubt sure did find its way into my thoughts, placing the unnecessary weight of worry on my shoulders, and leading me to believe that I was a burden.

There have been a number of times over the years when I’ve felt bad for asking my parents to take me somewhere, or requesting a helping hand when I’ve lost something and can’t find it again. There have been times when I’ve felt embarrassed when I’ve walked into someone, and moments shrouded in angst whenever I was made to feel guilty when taking a little longer to complete certain tasks.

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 wish I could hand my younger self the assurance I have now in order to bring more light into the darkest moments when the feeling of being a burden clouded everthing else. But I’m glad that I’ve grown to realise that the above isn’t true. Those who love you will never consider you a burden. I’ve learned to focus my energy on those people, rather than dwelling on the negativity from those who reckon otherwise.

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 and moments of doubt and uncertainty when I was bullied for being disabled at school.

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 sitting on the stairs at home and hearing my Mum say the words Retinitis Pigmentosa, explaining how it was pronounced and leaving me to come 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 the fact that something was causing my fading view of the world.

The confusion lingered for quite some time after that as I started to learn more about my impairment and its impact on my life, but it did eventually ease.

It’s hard to accept but not impossible

My younger self didn’t always understand that sight loss was not the end of the world. Yes, there are moments of uncertainty, frustration and isolation, but experiencing those doesn’t make it impossible to accept the condition in its entirety.

There have been so many occasions over the years when I’ve felt like I couldn’t accept the fact I was losing my eyesight; times when I felt like it was impossible to look past it. Those times brought a lot of negativity into my life.

But, eventually, I gleaned the fact that positivity could be drawn from the experience too, and this helped me massively in terms of finding acceptance.

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 which left me feeling 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, I wish I didn’t waste time on that mindset. As I’ve grown up, I’ve learned that sometimes, it’s not a case of whether someone wants to make an effort or not, some people might want to but they don’t know how. There is so much awkwardness surrounding disability due to the stigmas that’s linked to it and I think this can often influence how people react.

Sight loss is not a weakness

In my teenage years, I often considered my vision impairment to be a weakness. I guess this stemmed from the fact I had to have extra support, in the form of assistive technology and PA’s to go about my day-to-day life.

I’ve since learned that these things can be empowering; take the cane for example, I used to despise the thought of using it out of fear that it made my impairment more noteworthy to others, but a few years down the line, I’ve realised that it can give me so much more than it takes away from me. I’m far more independent now that I’ve picked my cane back up again. There’s strength to be drawn from doing something you were once scared of.

I’ve realised that there are many pros to contrast the cons of being vision impaired and this is 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.

It’s now something I try to tell myself every day; failing that, I will 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.

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 can come along with an endless amount of challenges 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 it tricky to navigate a feeling or situation – they’re a form of comfort in a way.

What are some of the things you wish you’d known when growing up, as a disabled person or not? I’d love to know if some of you can relate to some of the things I mentioned, and if you have any words of wisdom to share. I think we can all benefit from hearing them sometimes.

Elin x