A Letter To My Younger Self | EDS Awareness Month

To my younger self,

I just want to start off saying I’m sorry, I’m sorry for everything that’s happening to you, I’m sorry that for a long time no one but your mum will believe you, when you say something is wrong. And I’m sorry for hating you for so long, It was not you personally but the labels and gossip put on you that I still can’t seem to out run.

THIS IS NOT YOUR FAULT!! You were born with a genetic lifelong condition called hyper-mobile Ehlers Danlos Syndrome . Unlike what everyone tells you it’s not in your head, connective tissue is all throughout your body and it’s a part of every system. Unfortunately your connective tissue is faulty. You cannot control your EDS and you did nothing to cause it, it is not your fault! The pain you feel is 100% real and it sucks, I know you don’t know any different or how to explain how you’re feeling right now. But that will change as you get older in the meantime be prepared that you’re going to try and do you things that little bit differently, sports isn’t always your friend and you will struggle to keep up with others your own age. But that’s ok, you were always your best around horses and in a saddle.

A lot of people, especially people you trust are going to judge you and gossip about you, even to this day. And yes you are the kid who is come from a broken family and has anxiety from it. But that is not all you are and there is so much more going on than they even care know. It may take a years but you will meet others like you, that I understand what you’re going through, and help you to finally get the answer this you’ve been fighting for for so long. You’re going to become the voice you wish you had when you were younger and advocate for those with chronic illnesses and disabilities. And through that you’re going to feel the most yourself you ever have before.

I wish I could say your health will get better, but I don’t know that yet. I don’t know what your future will hold for you. But I do know that you’re going to face some of the hardest and scariest challenges with your health, you’re gonna see a lot of doctors and read specialist before you even get close to a diagnosis. And your teenage years you day dream about going to be very different to what you have in your mind. You going to be angry for a long time at the world for making you sick and to those who don’t understand. But you will always pick yourself up and dust yourself off and keep on fighting.

Your find calm and happiness in the little adventures each day and you’ll always have your head in some sort of project or writing about something. I know you do that now keep doing it, it’s gonna be the one thing that helps you the most.

Your world will be smaller and with obstacles you will face along the way but if I can remind you anything it would be that you are determined and that determination and passion is what will continue to get you through. Wear your stripes with pride because it takes a lot of strength and courage to live and experience life without was done lost syndrome.

Love, You from the future xx

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