How I deal with change in my vision impairment

It happens when I least expect it, when I’m absorbed by the mundanity of everyday life; making lunch, eating said lunch, stepping outside, walking into a room, and bam, there it is, the moment I notice it. The deterioration. The change. 

The moment manifests itself in a sudden game of spot the difference. Where there once was a blurry shape of a person, it is now replaced by darkness or a column of flashing lights that sparkles over their profile. 

Elin standing on a wooden bridge in front of a tree which has bright pink flowers blossoming on it. She's looking at the camera and smilingPIN IT

 The degenerative nature of my eye condition has always been written. I expect it. But, contrary to common misconception fuelled beliefs, I don’t wake up every day and think about the fact I’m vision impaired. So when change does happen in more of a dramatic way, it can feel daunting. 

Despite the fact that I’ve experienced deterioration over the past few years, it hasn’t been something I’ve acknowledged when going about my routine, because it’s normal, it’s part and parcel of my life as a vision impaired person. But there are those days when it hits harder, when I find myself saying ‘I can’t see that’ more often, when the weight of the next stage of deterioration squashes a blurred shape I could once see into the tiniest impression of itself, invisible in my view. 

It’s this sudden dwarfing that catches me off guard, spinning the anxiety laden plates at a dizzying pace that’s hard to know how to balance. 

It sounds very dramatic, but this is a very accurate representation of how I’ve been feeling recently, and during other, more noticeable, moments of deterioration. 

You see, losing eyesight is a peculiar thing. There have been times when I have cocooned myself in the naivety of it all, times when I’ve convinced myself that it isn’t as bad as it seems, moments when I’ve tried to struggle to see something because I could (in my blurry view) a couple of months ago. But the truth of the matter is that can make more harm than good, so too can disregarding the affects of what I’m truly feeling in order to try to go about my days in the same old haze.

But, Retinitis Pigmentosa is the gift that keeps on giving, or taking in this instance but that doesn’t have the same ring to it. It does mean however than I’m in the depths of the biggest bout of deterioration I’ve experienced in a long time, and there are certain things I find myself doing in order to deal with it all. 

Elin standing on a footpath beside a small lake. Bright summery colours can be seen on trees and plants in the background, including bright pink and yellow. Her right hand is raised to push a strand of hair behind her ear and she's looking downPIN IT

I am a big believer in the Social Model of Disability and how it is societal barriers and misconceptions that disable me. But when my impairment steals another fraction of eyesight away from me, causing my view of the world to be framed by even more blur and darkness, it definitely feels more personal.

With this in mind, I thought I’d share a few ways I deal with the changes and deterioration I experience, because who am I if I’m not writing about it, right? 

Change can be a scary thing, a thief of pieces of yourself that you thought you needed in order to bundle through life, but there are certain things that can soothe its impact, here are just a few things that help me. 

HOW I DEAL WITH CHANGE IN MY VISION IMPAIRMENT

FOCUSING ON THE POSITIVES

Honestly, you’d think that my keyboard was broken and stagnant on the copy and paste shortcut keys considering the amount of times I’ve alluded to this point here on the blog. But it goes to show how powerful thinking about the positives can be for me in terms of navigating this unpredictable journey. 

Yes, it’s a tumultuous experience which can propel negative frisbees onto the path, but there are so many positives in contrast that afford me the opportunity to throw those discs right back.

Bright pink flowers hanging on a tree branch, the green leaves of the tree can be seen as a blur in the backgroundPIN IT

Something that has always helped me is being able to supplement the loss with a reminder of all the things that I’ve gained because of my vision impairment; the friendships, the opportunity to share my experiences in the hope of helping others, the chance to work with some amazing people. It all goes a long way in terms of positioning me back on solid ground when I’ve felt as though it has been crumbling. 

LETTING MYSELF FEEL ALL THE EMOTIONS

Dealing with deterioration can be a lot. It can be a thread of frustration, discontentment or grief, snaking its way through the pillars of positivity that have been built over the years. I’m there trying to cut through those emotions, trying to slash the thread in half before it coils itself around the good things I want to hold onto.

This prompts a chaos of emotions that’s difficult to explain to somebody who has never experienced it, but I think a big part of that is that I haven’t always fully acknowledged these feelings for myself. 

So when it comes to dealing with changes in my vision impairment, I’m starting to realise the importance of letting myself sit with those emotions and remember the fact that it’s absolutely okay to feel sad, to grieve, to experience resentment.

Elin crouching down in front of an array of white flowers. Her left hand is raised to push a strand of hair away from her face and she's looking downPIN IT

I’ve become very cognisant of the fact that ignoring them is not a healthy way of moving forwards. Letting myself feel every emotion has become a key part of being able to find light beyond the darkness, and it ensures that I don’t let things build up in my mind without recognition. Bypassing feelings and tagging it as an ‘I’ll deal with it later’ matter can never be signed off as a good coping mechanism and realising that is becoming so important for me. 

I’m learning that the idea of powering through, of disregarding what you’re truly feeling in favour of appearing ‘okay’, is an archaic concept and I think that in itself is also helping me to deal with change as it comes.

DOING WHAT I ENJOY

Indulging in a hobby, whether its writing, listening to music, getting lost in a good book or simply taking some time to step outside has always succeeded in assuaging my worries and the fact remains when it comes to dealing with change in my vision impairment. 

I’m going to be a little contradictory to my last point here, it truly wouldn’t be a blog post of mine if there wasn’t some conflict of my own opinions, so here goes. 

Despite the fact that I think it’s important to acknowledge the emotions that come hand-in-hand with losing my eyesight, there are times when sitting with them for a prolonged period of time can do more harm than good, and that’s where doing the things I enjoy comes into play. 

Some days will naturally call for different coping mechanisms, so this is just an example of the importance of electing different ones into power when trying to address whatever emotion I’m feeling on a particular day. 

There are some days when acknowledging is invaluable but, on others, a distraction in the form of the things I want to do can be just as powerful and helpful.

Elin standing on a stone bridge in front of trees that flank each side of a small river. She's looking away from the camera to the right and she wears a cream lightweight jumper which has an oversized lace detail collar with grey jeans and a cream and tan coloured handbag which hangs in between her handsPIN IT

REMINDING MYSELF THAT I’M NOT ALONE

As swathes of conflicting emotions zoom into view when the deterioration strikes, replacing the object or person I could have once seen, albeit a blurry image, it’s easy to feel a tad lonely and isolated amongst it all.

I had little knowledge of how many people were experiencing sight loss when I was a teenager and this only magnified these feelings because I didn’t realise that I wasn’t the only one. 

But now, through blogging and being a part of the wider vision impairment community, dealing with change is slightly easier in the sense that I know that there are people out there experiencing the same things, people who are serving up advice online and providing reassurance that others are feeling the same way.

It can be a lonely experience, but it doesn’t have to be and the more I realise that, the smoother the sharp edges of deterioration become. 

ADAPTING

To cope with continuous change can be a challenge, and you bet that adapting is a huge part of the process.

Having to adapt elements of your life to fit in with the onset of change can be a scary thing in itself, but it can also reinforce the fact that things are still possible, even though deterioration might try to convince you otherwise. 

To live with a deteriorating eye condition is to accept that things will alter when those changes come, but to be confident in the knowledge that adaptations are possible and they can lead you to a more positive place beyond the initial neglect.

For me, knowing that I can adapt things to suit my needs and make life that little bit easier beyond the deterioration helps me to deal with change and recognise that losing my eyesight doesn’t take the ability to do things away, it just means that I have to find different ways of doing them.

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Navigating deterioration isn’t always easy, of course, but these are just some of the things that allow me to move through every day with a slightly different air when I find myself faltering. I find that they go a long way in terms of prompting a little steadiness when a bout of deterioration throws me off kilter. 

Elin crouching down in front of an array of white flowers, she's looking at the camera and smilingPIN IT

The truth of the matter is that I’m still adjusting, still trying to decode aspects and find pieces in this mammoth puzzle, and still being confronted by the feelings that come in lieu of more loss. 

No two days are ever the same because my eye condition changes its mind, prompting a riot of flashing lights one day whilst inflicting pain and spikes of sensitivity on others. Whilst I like to keep busy to subdue the recognition of such severe changes, I’ve also learned the importance of taking a step back and afford myself the space in order to keep up.

Living with a deteriorating eye condition is an unruly and unpredictable experience, but all of the above is central to ensuring that I go about this journey in a healthy way and help to keep me grounded when I feel unsteady.

A tree with bright pink flowers on it stands beyond a small lake, it's surrounded by greenery and a corner of a boathouse can be seen on the leftPIN IT

Change will alter the ways I go about doing some things, it will prompt emotions that are hard to tame, but ultimately, it won’t change who I am.


If you’re also going through the process of losing your eyesight, I’d love to know if there is anything in particular that helps you to deal with change in your vision impairment. Also, if you’re experiencing deterioration right now then I want you to know that you are not alone. You can never be prepared for change, even when you expect it, and you can never quite tell how you’re going to react when it does happen. But with an arsenal of coping mechanisms under your belt, be assured that you will be okay. 

Elin x

Comment

5 Comments

  • Robin Dunford
    June 6, 2021

    Hi Elin

    Another very thoughtful blog as always. I can understand everything you have gone through regarding the loss of your vision as on two occasions i have almost lost all of my vision, but on both occasions have been fortunate enough to have operations at Moorfields eye hospital that have restored some of my vision. I know that you have been able to cope with your vision loss because you are a really positive person which gives you the strength to cope with with the situation that you have been dealt with. This stands you in very good stead.

  • Theresa Jones
    June 6, 2021

    Elin
    I too have RP
    This diagnosis presents every day challenges with surprises along the way
    I’ve become more anxious
    Worry about little things
    And struggle to think what the future holds in a crazy world of the
    of the unknown

    Trying to be calm

    Take each day

    Trying to stay positive

    I very much enjoy reading your blogs

  • Pat
    June 6, 2021

    Hello Elin,
    Your description of vision loss is so well-said. I am going through the same kind of loss, and it is indeed loss. I notice it in the little things, cannot really measure it but know it when it comes. My promise is to live gratefully. Every day I note somethng to be grateful for. Blessings and live creatively and gratefully! -Pat

  • Holly
    June 7, 2021

    Such a thoughtful post which captures sight loss in a beautiful way. Really proud of you for posting this and for sharing your feelings and personal experiences, I’m sure it’ll help others going through the same thing xxx

  • SJG
    October 13, 2021

    Hi Elin
    This captures the unpredictable journey of RP brilliantly. The highs of another day in familiar territory followed by a day where change hits like bolt from the blue. Even though you know what to expect, the deterioration is always a hard and rather cruel reminder of what is ahead.
    Beautifully written.

    Much love from a fellow RP warrior.

    SJG xx

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