An open letter to my parents following my diagnosis

Twenty years ago, I was diagnosed with Retinitis Pigmentosa, a degenerative eye condition which would result in me slowly losing my eyesight over time. It sounds like the beginning of a sob story but I can assure you that it’s not. 

Have there been and are there difficult times? Of course. I’ve spotlighted many of them here on my blog over the years, from the grief of losing my eyesight to all the societal barriers that exist. But there are also plenty of positives – the way in which I’m able to draw on my experiences to help others tops my list.

However, at the time of diagnosis, my parents weren’t instilled with any semblance of support. They were sent on their way with a handful of pamphlets embellished with medical lingo that offered little in the way of comfort. 

Online articles mirrored that information with the black and white facts of what RP involves cause for further deflation. 

This got me thinking about how valuable hearing about vision impaired people’s lived experience would have been to my parents back then to contrast the doom and gloom of the facts and stats.

With this in mind, and in honour of the 20-year anniversary coupled with Retinitis Pigmentosa Awareness Month this February, I’m sending an open letter two decades into the past to hopefully provide some of the reassurance my parents were seeking at the time. 

An open letter to my parents following my diagnosis

Annwyl Mam a Dad,

Times are tough as I write this… It’s 2025 and our football teams are fighting relegation – sorry to kick you while you’re down Mum.

But, despite the results, we’re as passionate as ever about the game – yes, me included. A large part of that comes down to how we find alternatives to bolster my enjoyment of going to and experiencing matches, from the monocular we carried with us which affords me the opportunity to spot players on the pitch, to the audio descriptive commentary that allows me to listen to the action as it happens, plenty of adaptions can be made to ensure that I can cheer, or sigh most often in our team’s case, along with you.

These experiences and the way in which you support me to find an accessible way of doing them is characteristic of the strength and positivity you hold and will instil in me as I grow up.

In terms of where you’re at right now, I can only imagine how confusing, disarming, scary and uncertain this time must feel for you; the sterile hospital corridors offering no comfort as you retrace your steps to the entrance, emerging into a world that’s now forever changed, holding onto my hand tightly, knowing that you won’t be able to do the same for my eyesight. 

You feel like a boat unmoored and drifting away from the reality you had in mind for your child. 

I, meanwhile, in all my six-year-old innocence, am none the wiser as to what all of this means. Confused and quite often upset by all the tests? Yes, but unaware that this isn’t normality for everyone. There I am in the back of the car, scribbling words in the thumb sized notebook Nain bought to keep me entertained on the long journey, perhaps that’s what ignited my zeal for writing, something that will help keep me grounded amongst the turbulence of the highs and lows of this ride we’re about to go on. 

It’s a relief to have an answer but I know that you wish you’d never have had to ask the question in the first place. Walking away with no support must feel incredibly daunting which is why I’m reaching out to you now. I’d suggest avoiding the internet because you won’t find any reassurance online, at least not until blogs start to populate search results. Believe it or not, my own will be amongst them one day so scrub up on your photography skills, Mum, you’ll need them for when I request we take outfit shots to accompany the endless scrolls of text I find myself typing.

Writing will ultimately be a sort of therapy for me, an escape you’ll champion through allowing me to hog the family computer and stocking up the printer with paper that will soon be stained with evidence of my vivid imagination. 

I hope you find your own form of escapism too and that you reach out for support, guidance or reassurance whenever you need it. I know we’re quite reserved as a family, we keep ourselves to ourselves, but there is power in relatability and a sense of solidarity in meeting and chatting to others in a similar situation.

So when those leaflets advertising family weekends come through the door, take a moment to seriously consider going along and don’t let my shyness deter you from attending because there will come a time when we find ourselves reflecting on how valuable these experiences could have been, musings that come after I deliver a talk at the very event we always turned down (I know right? Me, speaking in front of an audience? Who would have thought?) All the local Eisteddfod’s you’ll soon be cheering me on in will have played a part in preparing me for that and it helps that I can’t see the people in front of me.

You’ll always endorse this kind of self-deprecating humour, something I quite often use as an antidote to the heartache that comes with further deterioration and the challenges of living in such a visual world.

You’ll naturally worry for me as I navigate that world, perhaps even more than I do. Your nerves will be shred to pieces as I venture on my first independent train journey, and every one after that.

Our roles will almost be reversed during these times with me trying to infuse reassurance in your mind – I will be okay. We’ll celebrate that fact when I return but, amongst those wins, will also be frustration, particularly when failures in passenger assistance attempt to taint my confidence. You’ll support me as I type countless complaint emails which unfortunately don’t lead to consequence, but I appreciate your encouragement to speak up and call for a better and more equal system, not only for myself but for other disabled people too.

Your commitment to nurturing my independence and self-confidence will ultimately be one of the things I’m most grateful to you for. I can imagine that your fierce urge to protect me will often be at odds with a desire to see me thrive but resisting the urge to wrap me up in cotton wool and allowing me to experience summer bike rides with friends, den building with Mei and quad bike rides will embolden me and bestow a feeling of belonging in a society that so often tries to strip it away.

These experiences will empower me in a life I know you will all too often feel powerless within, knowing that RP is a part of me but being unable to control it. I’ll feel that pain too, sometimes quite literally because there are a lot of bumps and crashes ahead.

You’ll find yourself cooing reassurances into my ear as you cradle me after I hear one too many nasty comments at school; you’ll nurse my cuts, bumps and bruises after I trip over the obstacle of the day and crash into gates, cupboards, doors, walls and everything in-between; and you’ll share my frustration when people speak to me as if I’m a child when I’m in my twenties or disregard me completely to direct a question about me to you instead.

But for every barrier or negative attitude, there is plenty to celebrate too. We’ll create so many special memories, I’ll succeed in school, carve a career for myself, develop passions from writing to music and fashion, and will ultimately be able to use my experience of living as a vision impaired person in a positive way.

Thank you in advance for being my biggest cheerleaders, for loving me unconditionally and for your unwavering commitment to making this life a fulfilling, accessible and inclusive one for me in whatever way a situation calls for.

Right now, questions of what this means, how it’s happened and what’s ahead will no doubt be at the apex of your anxieties and I rue the fact that I’ll never be able to peel back the extra layer of worry you carry as a result of my diagnosis. However, having lived with RP for over two decades by this point, I can confidently say that everything is going to be okay.  

I know it’s easier said than done but I want you to try to erase the guilt you feel. This isn’t your fault. 

The societal barriers that exist will configure some challenges and many things will be out of our control, but we can always hold on to hope and each other when things get difficult. We’re going to learn a lot, we’ll laugh, cry, feel liberated and defeated, sometimes all within the same day, but we’ll always draw strength from our togetherness.

There will naturally be many more hospital appointments ahead and I’m sorry in advance for my resistance to all the drops and tests, it’ll take me a few years to get used to them. The most sobering visit for me will be the one in which we leave with a new label sticking to my existence – severely sight impaired. At twelve years old, these are words that will serve as a reality check as to what all of this means for me and my future in the context of my impairment. 

As I notice deterioration, I won’t always yield to admitting it’s happening, perhaps in an attempt to protect myself and you from the reality of it all. That’s not always the wisest or healthiest move from me but I have now developed techniques that allow me to remedy some of that pain. 

One of the key messages I parrot to myself and others is that the problem doesn’t lie within me but rather in an inaccessible and unequal society. I’m going to try to challenge this in my own way through writing and sharing my experiences and your support is imperative to my success in this.

You’ll tell me countless times over the years that you’d switch places with me in a heartbeat, but I want you to know that I would never want you to. As I’ve grown up, you’ve infused character, determination, self-worth and strength into my being, traits that make it easier for me to handle this life. I can do this whole journey because of you and how you’ve raised me. 

I will be okay but I’m incredibly lucky in the fact that I can turn to you whenever I feel like I’m not. Thank you for always showing up for me, for meeting me where I am and being there at both ends of the spectrum, during the good and the bad and for guiding me if I need a hand to move forward.

Your ambition to create a fulfilling life for us as a family is something I’ll always treasure. I will naturally experience loss and grief for my eyesight along the way and I know you’ll feel that pain too as it happens but we’ve got this. And hey, at least I can’t see when our football teams play badly. Every cloud, right?

Dwi’n caru chi.

Elin x