Updated: Aug 6, 2021
Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching to some of the slightly older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
In this edition, the letter comes Josh Steels. Josh lives with Ehlers Danlos Syndrome, and has been a wheelchair tennis player, and currently plays wheelchair basketball.
This is Josh's LETTER TO MY YOUNGER SELF!
My word, where have the last 28 years gone?
Your brother will tell you to ‘enjoy your teenage years as once you hit 18, it passes by in a flash’. Word of advice, listen to him. The last 10 years have flown by. I’ll get to the answers I’m sure you’ll be wanting first of all; no grey hairs yet and that baby face is still serving you well, albeit a little more weathered now.
On the topic of hair, lets just address that baby photo. I don’t know who’s idea it was to maim you like that. I’m assuming a bowl and some scissors were the only items available at that time in 1996, but nonetheless its inexcusable. I’d say your style improves over time but in all honesty the frosted tips and hair gel look was something you rocked for far too long.
Its not all fun and games, especially going undiagnosed for the first 11 or so years of your life. Nowadays you’ll know it's Ehlers Danlos Syndrome – but back then all you’ll know is you’re in pain, your joints keep dislocating and you keep falling over a lot.
You’ll describe your pain to various different ‘specialists’ over the years, most of whom have absolutely zero idea of what you’re talking about. But eventually you’ll go to London, speak with someone at the Hammersmith children’s hospital and you’ll come away with a diagnosis.
I can assure you its not all in your head like you‘ll be told for so many of your early years.
The pain is still absolutely killer, if anything its worse now. But you’ll have learnt ways to manage it and make sure it doesn’t stop you from doing things you truly want to do. You’ll have bad days. Days where you can’t get out of bed. There will be times when you wake up screaming with pain. But what’s life if it doesn’t throw a few curve balls your way?
You’ll graduate from university, get a job and from time to time actually act like a real adult!
Your friends, family and work all understand how your condition can change from day to day. What more can you ask for!?
Spoiler alert, you’ll be given the chance to play wheelchair tennis just after your 14th birthday. Pick up the racket and give it a go – you’d be surprised how far you can go being slightly above average at hitting a ball over a net.
You’ll actually go on to be the number one ranked junior in Great Britain and eighth best junior in the world at one stage, all whilst representing GB on three separate occasions too. Although I won’t lie a good 90% of those trophies are in your mums loft now.
Again you’ve got some train wreck stories to look forward to from a sporting perspective. I’ll leave it up to you to decide whether or not you learn more from the losses! But I can assure you its better to be on the winning side of a 6-0 score line.
All jokes aside, disability sport will be like another family for you. Not that there’s anything wrong with your actual family, but through sport you’ll make some life long friends and it’ll help shape you into the person you’ve become.
In a world where people still stare at you for getting out of your car and either walking or getting a wheelchair out the boot…really its 2021 guys? Disability sport accepts you for the most part.
I say most part, down to the classification issues that myself and other athletes are going through now. It truly sucks to be told ‘you’re not disabled enough’ to potentially play a sport at Paralympic level anymore. I’m not saying you’ll ever be at that level anyway, but to have that opportunity taken away due to people’s poor understanding of certain conditions, rather than lack of talent, is still pretty awful. Hopefully this will change, the International Paralympic Committee sure have a headache on their hands, but it’s one of their own creation so really I’ve no sympathy for them. The only people it effects is the athletes – of which they are supposed to be protecting, and in my opinion are failing miserably at. But hey this isn’t supposed to be some political bash the system kind of letter, I’ll let you discover these things as they happen, I guess!
The main thing is you’re happy with life right now.
You’ll eventually end up playing wheelchair basketball, meet your best friend and you’ll win a few matches on your way to playing at the highest league level in the UK together.
Nowadays the two of you shudder at the thought that most of your teammates are now born after 2005 – I was 12 years old and already madly in love with all five members of Girls Aloud in 05’.
So good luck navigating life Younger Josh, I’ll try my best not to balls up the next however many years ahead of us.
If you would like to be a part of our "Letters to my younger self" series, you can get in touch with our youth coordinator James Brooks at firstname.lastname@example.org