A letter to my seventeen year old self:
You’re going to get sick.
Really sick, not dying, but sick in a way you never knew people could be. It’s going to be terrifying. It’s going to last, it won’t get better but it will be tolerable and manageable…most days at least.
Some days you will barely make it out of bed. You won’t be able to leave the house, be alone, cook or walk without something happening… you will spend mornings on the sofa with everything you could need: food, water, mobile, house phone, tv remotes, books, laptop because getting up is not safe.
Your mum will come home from work every lunchtime, your dad will ring at least once a day, your sister will drop everything because you did get up and went unconscious (like you knew you would) and hit your head on the bath.
You will hate it. It will last a few months and get better. And worse too.
The losses of consciousness will ease (over the course of years, not fully disappearing though), you will lose friends, especially a good friend who you think understands but she doesn’t and she doesn’t want to. You make a new friend a little bit later, you meet a soul sister.
You will get a diagnosis that asks more questions than it answers. You will be more tired than you have ever felt before and those will be your good days. You will be in constant pain. Everything hurting all the time. Different levels of pain different parts of the body but still pain.
It sounds horrible and it is hell. But you will get through, you must keep moving forward because there is no other option.
You will find yourself in this illness. You will call yourself a feminist and an optimist. You will find out that you are stronger (mentally and emotionally, physically you will get weaker) than you could imagine.
You will see you parents cry over how bad you are, and will be the one offering comfort. You have a sense of humour to get you through but some days are dark and devoid of laughter. But they pass.
You will learn to find beauty in the little things, the brightness of the moon, the rain on the window, the recipe you accomplish, walking a little bit longer today than you did the day before.
You will give up your English Lit degree without graduating and without regret. You will take a break and go back to study at a different university and a different degree: Business. Don’t ask why, I’m part way through and can’t answer that. But you will do well. I don’t know if you will graduate, not yet, I’m still working on it. I promise that I will do my damndest to graduate. Studying is so much harder when your mind is blank and gets blanker the harder you think. But you will work hard and study harder and you will learn to trust your instincts… it comes in handy.
Let your instincts guide you, trust yourself and you will be surprised at what you achieve.
You will learn to love yourself, live each day as it comes, don’t feel guilty for resting… you will do too much a few times and not pace. Learn quicker than me. I still get this wrong and pay the price. Listen to mum when she tells you to stop. This is a long and hard lesson that hasn’t sunk in yet.
Don’t be too proud to use a wheelchair, screw what other people think, don’t judge and try not to get too defensive when people judge you. Your empathy level will go down for what you consider a small hurt. But don’t diminish someone else’s pain just because you deal with worse on a daily basis.
Most importantly remember who your friends are (they are the ones who stay), that family is there to lean on, you can ask for help and you can cry without being weak. You are strong. You are powerful. You are incredible and you are going to make it through all of this. Just hold your head high and put one foot in front of the other.
You got this. We’ve got this.