It’s time to dust off yet another chapter of my life, one I have only mentioned briefly in some of my previous posts. Something which I think needs to be talked about more; my story and experiences with sight loss and isolation.
This is undoubtedly one of the most personal blog posts I’ve ever written but it’s a topic which I think is important to highlight.
I think that loneliness and isolation is a topic that can often be stigmatised and that’s why I want to talk openly about my experiences in the hope that it can help others who might be in a similar situation.
I know how hard it can be to admit that you’re feeling isolated in any way and it’s something I struggled a lot with, especially during my time at school. I really could have benefited from reading blog posts like this and hearing about other people’s experiences when I was younger so I’m hoping some of you might be able to relate to what I have to say.
I don’t remember the day I was diagnosed with Retinitis Pigmentosa, after all, I was only six years old – funny how I still remember snippets from a holiday when I was four but not the day of my diagnosis, I guess the holiday was more fun after all. However, I remember the day in 2010, when I was 12 years old, sitting in front of my ophthalmologist and hearing him say that I was being registered blind/severely sight impaired due to the deterioration in my eyesight.
I remember wandering back through the hospital corridors, thinking to myself, what next?
Before then, even though I was being bullied for it and I was constantly tripping over chairs and making a fool of myself because I couldn’t see much of what was in front of me, sight loss didn’t feel real to me. I had a good group of friends and I put the occasional feeling of loneliness down to the fact that I was really shy and that social situations really did terrify me sometimes.
How my vision impairment contributed to the feeling of isolation
It wasn’t until I started secondary school that the feeling of isolation due to my vision impairment really started to kick in.
It was at that point that I was starting to learn more about the misconceptions surrounding sight loss, people’s attitudes towards it started becoming more apparent and I was finding it difficult to explain my condition to people because I was still trying to familiarise myself with it and trying to learn how it was affecting me in different aspects of my life.
Even though I had a group of friends who I had fun with, I was constantly feeling like the odd one out and the feeling of being different was increasing.
I couldn’t see people when I walked into the canteen so if I wasn’t walking with my friends from lessons and sticking with them whilst they were getting their lunch, I was often left to sit alone because I didn’t know where they were.
I think this often led to my friends thinking I was ignoring them but the reality was that I just couldn’t see them.
Because of having night blindness which means I go completely blind in the dark, I often turned down chances to go out with my friends in the evenings because I was afraid of losing my way and being left somewhere, having no idea where I was or where to go from there. This then often led to distance being created between the people in my friendship group and I because in a way, I was letting my vision impairment stop me from going out with them.
Don’t get me wrong, I was still meeting up with my lifelong friends on weekends and during the summer holidays, going on bike rides, trampolining and having all sorts of fun but as my vision deteriorated, I found that I wasn’t able to do those things as much and I found it difficult to substitute the things i couldn’t do with the things I could.
Seeds of doubt were often being planted in my mind, people telling me I couldn’t do or achieve something due to my disability, others ignoring me because, in their minds, it wasn’t ‘cool’ to talk to someone who was visually impaired.
This kind of treatment triggered the feeling of isolation for me, a feeling which swamped me for such a long time.
It was a feeling that often lingered in the back of my mind throughout my time in school but it seemed to become more apparent to me as I grew up and it was when I was in sixth form that it really started to become a persistent feeling.
My vision was deteriorating quite dramatically and I found that difficult to deal with at times.
I found myself distancing myself from a few of my friends and, at school, I found myself sitting outside on my own, even in the freezing cold winter months because I didn’t want to walk into the sixth form block, not knowing if there was a place to sit, not being able to recognise people’s faces and being afraid that they’d judge me if I were to go up to them and ask if there was anywhere free for me to sit down.
I think that a lot of my own feeling of isolation came down to how I was feeling towards my vision impairment at times.
I didn’t have much confidence in explaining my condition to people and I think that not having that confidence to explain my condition to others meant that it was inevitable that people wouldn’t understand it because it’s not something everyone comes across in their everyday lives.
But, I think that some people’s attitudes contributed to why I found it difficult to open up, I was coming across more and more misconceptions and I thought that opening up would make me more vulnerable, I’ve since grown out of that mindset and realised the importance of explaining my condition to people and making them aware that they don’t need to treat me differently.
So, how did I combat the feeling of loneliness?
Even though I still have the occasional flutter of loneliness, it’s nothing compared to what it used to be.
I now talk to other people who are also blind/VI and I find so much comfort in doing so. I never realised how powerful talking to others in a similar situation could be.
I used to be so reluctant to talk to other vision impaired people because, in a way, it made everything more real for me, hearing about what could be in store for me in terms of my disability brought me a feeling of dread and that’s why I turned down many opportunities to meet others who were also VI.
It wasn’t until I started my blog that I started reaching out to fellow blind/VI people. Talking to them, hearing about their experiences, reading their blogs and watching their YouTube videos helps me in more ways than I ever thought possible. Not to sound cheesy, but it really does make a difference and has helped me to feel less alone.
Also, writing my blog has helped me a lot, documenting my experiences, getting feedback on them and being able to reflect back on what I’ve written in the past helps me to realise how far I’ve come and how much things can change.
As I’m sure you can tell, I tend to get carried away with writing my posts sometimes, they’re almost like mini therapy sessions for me so even if no one reads them, at least I have them to look back on and help myself in a way.
I also have such a good support network of friends and family around me who have helped me through some tough times and I’m incredibly grateful to those who continue to stick by me. Even though some of my friends and I have gone through the motions over the years, I am so incredibly lucky to have a lovely group of people who support me, people who will always assure me that I’m not alone and who will always be at the other end of the phone if I need a chat.
Those people have helped me to find acceptance and helped me to embrace my differences.
There were times when I thought I’d never get to that point so I’m so thankful to those people who have stuck by me and who haven’t given my vision impairment a second thought, they just see me for me and that’s such a lovely feeling.
Feeling isolated used to make me fearful of what the future would hold for me but since starting to talk to others in a similar situation, starting my blog and talking about my experiences more openly both on and offline, I now know that I don’t deserve to be condemned to a life of isolation due to my disability and neither does anyone else.
I can’t stress the importance of reaching out enough, if you’re feeling isolated or lonely in any way, it’s so important to talk about it, whether that’s by contacting a charity, finding others who are in a similar situation, attending social groups if that’s your thing or just reaching out to a friend or family member.
I used to be scared of doing all of the above but once I did, I realised what the benefits could be and I haven’t looked back since.
The more we talk about our experiences of isolation, whether that’s due to a disability or for any other reason, the easier it will be for others to reach out and feel more confident when doing so.
Have you or do you ever suffer with a feeling of loneliness or isolation? What helps you to combat that feeling? Let me know as I’d love to hear from you.