Chloe wearing a denim dress and yellow shirt looking at her cane.
Disability,  Visual Impairment

6 Things I Wish I’d Known When I Started Losing my Sight

Currently I am on my way to the RNIB See Differently Awards! This is such an honour and I cannot believe I am a finalist. Yet this got me thinking. I have only been writing about sight loss for a few years and part of my aim is for young people with sight loss to not feel alone. It’s not something that is massively spoken about and I hope to change that.

I was in my first year of university when changes in my sight started to happen. It was then several months later that I was registered as partially sighted. This has never been something that was anticipated to happen and is something that I continue to get used to. However, over the last two and half years I have started to use a long cane, graduated from university and now work full-time. I fully appreciate that losing your sight can be a devastating and ongoing process, yet here’s what I wish someone would have told me.

Your sight might change on a daily basis

When I started to lose my sight, changes in my vision were concerning and scary. No one reassured me that changes throughout the day or in certain situations were normal. For me, my level of sight can change for all sorts of reasons. Things like light, tiredness and concentration started to determine how much I could see, with this only happening once I had lost some of my sight.

I believe this also to be down to what sight loss is supposed to be like. It’s often described as something that is black and white, a fixed condition which cannot possible fluctuation. This couldn’t be further from the truth. Our sight can have such drastic variations.

It is these changes that can complicated our condition further and cause frustrations. If you have useful vision remaining then it is very easy to rely on this to go about your daily life. When faced with an situation where you cannot see what you need to, it can be extremely worrying.

It’s okay to be scared of the unknown

You often can be given a diagnosis, an uncertain prognosis and then are sent on your way. That in itself is scary. To be told, ”we don’t know”, when discussing the future of your sight is awful. Yes, you will find a way round things and it’s not going to be the end of everything. However, let’s not dismiss this very significant time in someone’s life. At that moment it can feel the end of everything and I believe that to be a justified reaction.

It might sound silly to someone who has never experienced sight loss, but your mind will go straight to the future. What if I become blind? What if I can’t get a job? Will I have enough sight to see my future children? Having those worries is okay and you aren’t overreacting.

Acceptance towards sight loss is a long process that can scary.

The public attitudes towards sight loss

When I became partially sighted and started using a long cane I instantly became aware of stereotypes which previously had not been thought about. The general public often think someone is completely blind if they use a long cane. In all honestly, this also was my view. When it was suggested that I started using a long cane I was so confused. Surely I had too much remaining sight to use a long cane?

Unfortunately there is such a lack of awareness about what being blind or partially sighted is. With this being emphasised by deep-rooted stereotypes. Even when offence is not intended, I have received my fair share of very unhelpful comments from the public. The idea that sight loss is a huge spectrum is massively understood.

On the other hand, sight loss has meant I have has experienced kindness from strangers who have enabled my independence. I get to see this generosity on a regular basis which makes me grateful for their compassion and understanding.

I just hope one day that blind and partially sighted won’t be targeted for their disability. This lack of understand does need to change and it is only through sharing our experiences that we can get there.

There’s a way round things

How was I going to complete my degree, be independent and get a job? This was a serious worry of mine and something I often gave a great deal of thought.

As time has gone on, I have accumulated an abundance of magnifying glasses and devices, as well as beginning to use audio alternatives. At work I am learning how to use a screen reader to try and relieve some of the strain on my eyes. I’m not yet reliant on this type of software, but this shouldn’t be mistaken for not being able to benefit from it.

The magnification feature on my iPhone has become a personal favourite for reading menus, checking washing machine settings or medication boxes. Who knew you could have all of this accessibility at your finger tips! I’ve also learnt how to navigate with the use of a cane and try to lot let my sight loss limit what I can do.

Learning ways round things has also been about accepting how things are and factoring in time for my eyes to rest. It’s equally about not being as frustrated when you are having a bad day.

You don’t have to explain yourself

When I started using a long cane I began explaining and justifying my own actions to others. In reality, I myself needed the reassurance that it was okay to use a cane and I was trying to convince myself that it would be helpful.

I often got asked, “what happened?’, when I met up friends or past university staff on a corridor. Initially I had no idea how to answer this question. For me, nothing had ‘happened’ and it was only visible to them because of the long cane in my hand.

Life does continue

Living with unknown sight loss as a young adult is not something I’d choose to experience. However, it’s taught me a lot and is now just part of who I am. Things do get easier. You find things that works and sight loss won’t always be all-consuming. It might not seem like this, but you can do this.

Elin, Chloe, Holly and Amy stood in a line smiling at the camera

You’ll be surprised at how you can adapt, and that the ups and downs do become worth it. Yet for me, this is partly down to the sight loss online community. To all those blind and partially sighted bloggers and campaigners, you give me hope that the world will be more accepting and accessible for someone with sight loss. It is through knowing others who are facing similar challenges that allows you to pick up your cane, head out the door and face whatever the day may bring.

~Chloe x

4 Comments

  • Wendy Gee

    Hi Chloe, I am a friend of your dad, Bob. I live in Selby. My daughter, Victoria, who lives in Sheffield, lost her sight a year ago. She has Lebher Hereditary Optical Neuropathy. Before losing her vision she was a document control supervisor for the HS2 rail project based in Birmingham. She is finding it so hard not to be working at the moment and gets very frustrated. I find your blog so up building and hope to read her your comments next time I visit her. Like you she has other illnesses, ie bipolar.
    I look forward to reading more of your blog.

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