I find writing letters to my younger self therapeutic. I have told “little Sarah” how she should have accepted her body from a younger age. Why being bullied wasn't her fault. Most importantly, how it's okay to let her disability define her.
I'm not just speaking to that six-year-old girl buried within me in these letters. I am reminding myself now, at 34, that all these things, these worries and anxieties, are okay. That I lived through them, and that I survived them.
I know you smile every time your nan calls you that. You love your hair, and to this day, it is still complimented and one of your best features – thirty years on. Keep looking after those locks.
You already know physical and emotional pain, and you're going to get used to it. In fact, you won't think of yourself as complete without it. Wild, huh?
Don’t hate yourself for what’s happening to you
Physical pain comes from your bones, your muscles, and your insides. You think it'll go, and some days it does. You will have plenty of days when you're little when you don't feel the ache of an elbow or the throbbing in your knees.
But soon, it will become part of you. You'll resent that, hate it, and hate yourself.
Please don't hate yourself.
It's not your fault. You'll want to blame someone, but no matter how hard you look, it's nobody’s fault. It just happened. It just is. These are the cards you were dealt.
Tell someone what’s going on
When you reach secondary school, things will get worse. I'm sorry to tell you this, but the pain becomes a monster on your back. It rips at your hips, your knees, your spine. It takes over all of you. You could drown in your tears, and I urge you to cry. Cry all those tears because it's cathartic and releases some of the tension you constantly carry around.
But tell someone. Talk to your mum or your nan. They know you're struggling, but you hide so much. You hide behind a fake smile that is constantly plastered on your face.
Your friends don't know what you’re dealing with. They have no idea what you're going through because you've built up a wall. You think you can handle it all on your own. But you need support, so please speak to that friend you trust. They'll listen.
Treatment will help you manage your chronic conditions
You'll wait years for a diagnosis, and so many will flood in at once. They'll be ones you can't pronounce or spell, but they all make sense. They explain the daily battle with your body.
You've been taking various medications your whole life, which won't change. You'll need it, and that's okay. The pain is too much to handle without it. You're not weak. You'll need mobility aids, splints, and people to look after you, and that's okay, too. You're not a burden. You've never been a burden. People love you, and they want to be there for you. So let them.
It gets hard, really hard. You'll think you've had enough, but don't give in. Don't ever give in. It's agony, I know. You don't understand why your body is torturing you. You don't know why you can't get a decent night's sleep or why this is happening to you in particular.
Take each day at a time, and pace yourself. You’ll hear that phrase a lot, and it'll annoy you. But once you practice it, you'll see it makes a huge difference.
You’ll live with pain and still find happiness
Although agony is what you’re used to, it helps you. You're living your childhood dream now, in the present. You're a writer, a photographer, you have your own little family, and you're in love. You're so happy. You learn to live with chronic pain and talk about it to help others. You become the person you wish you had when you were younger.
You're a realist; you know you won't get better or find a miracle cure. You know you'll have more bad days than good, but you make the most of the good days and are resilient.
You are this person because of the agony, the sleepless nights, the surgeries, and dislocations. Your disability made you, and as soon as you realise that, you become empowered and accept yourself and your body.
Pain is a constant. You can always rely on that, but so is your determination.
I love you, Tattyhead.
NPS-IE-NP-00474 August 2022