A Letter To My Chronic Illness

To my chronic illness,

Where do I begin? Writing is hard. Well, concentrating is hard. Funnily enough, you are the reason it’s so hard for me right now to think straight and form coherent sentences.

I’m currently sat facing the window, and every time I look up at that beautiful blue sky outside I dream of the day you stole from me. Today should have been a day filled with ice lollies, bare feet on warm concrete, drawing in the back garden, sitting in the grass making daisy chains. Instead, I’ve been in bed today. This is one of the first real days of summer we’ve had this year, and hopefully not the last - but summer only lasts a few months, especially in Scotland, and it will take longer than that for you to loosen your grip on me.

You’re always with me, but you’re no friend of mine and you’re certainly not a part of me. You’re like a leech, stuck to me, sucking the life out of me. You drape me in veils of exhaustion, hiding me from sight. You trap me with invisible weights, you swap out my muscles for cement. You place walls of impenetrable glass between the world and I, and I’m forced to sit and watch other people having the life I could have had.

I try not to let my fear of you consume me, but it’s difficult. You have more power over me than I do, and that can be terrifying. If you decide I’m not moving today, then I’m not moving today. I can fight you, but you’ll just make me pay later. It’s like I’m borrowing money from you, and your interest rates are sky high. You have final say in all of my decisions, and sometimes it feels like all I’m doing in life is breathing.

You took something from me that I can never get back. Even if I someday recover myself from you and am well again, I will never get to experience being a healthy teenager. I will never un-experience the emotional trauma of being housebound at 14. I will never be able to un-feel that feeling of utter isolation, like nobody in the world outside of your house knows or cares that you exist. I will never know what it was like to be on the other side of those walls. I don’t think I will ever stop grieving for the years you took away from me.

You’ve made me into the person I am today, but I just can’t bring myself to thank you for that. Yes, I am a better and stronger person than I was before you darkened my doorstep; but surely there must be easier ways to learn the lessons you taught me. You forced me to learn the art of putting myself back together from shattered pieces on the floor. At one point, when I felt like a translucent ghost of the person I once was, I thought I was lost beyond repair - and in a way, I was right. I could never be the same person I once was, because you had drilled into me new qualities that I hadn’t had before, and refined the pre-existing ones. I’ve learned resilience, strength, and quiet determination from you – but I learned those things years ago. Please stop teaching me now.

I am proud to have endured the things you’ve put me through with as much grace as I have, but I don’t want you here. I’m not embarrassed by you anymore. I’m not ashamed to be a wheelchair user, I know that although you make me weak physically you make me strong emotionally. I will survive whatever you have left in store for me. And, for the most part, I’m not angry anymore. For the most part, I’m just sad. I think for a long time I wanted to stay angry – not just about you, but about anything in life that hurt me - because if I’m choosing anger then at least hypothetically I have the option to choose to be happy instead of angry. But anger doesn’t fade into happiness, it just fades into sadness. Anger is like a tear that needs mended, but sadness is like a stain on your heart.

I’m trying to accept life with you around – just like I’ve been trying to for 7 years now. Every time I think I’ve got the hang of life with you on my side, you go and switch-up your attack method. I don’t think you would be so hard to live with if you were predictable. Instead, it’s like talking to a brick wall – or worse, like trying to reason with a 3 year old who has their heart set on having nothing but candy for dinner.

I have a lot of complicated feelings about you. This is normally where some sort of summary, or round-off line would go, but there is no way to condense any of these feelings into one line or even one paragraph.

Isabel