To the girl in the waiting room,
You don’t know me, but I know you because I have been you. I have friends who have been you. Right now I am watching you and its clear you feel like your whole world has fallen apart, you are devastated and full of questions. Wondering if the life you imagined is still possible, what this means for all your plans. I have been you twice, once as a child with no comprehension of what was going on - an ignorant bliss to be honest. The second time as a 21 year old; I too cried, I too broke my heart and wondered what was to come. I watch as you are clearly embarrassed about having this condition, barely wanting to say its name.
My heart breaks for you, more than it did for myself back then because the difference is now I KNOW. 24 years with this condition and TEN years on from when my own seizures started again I KNOW. I know there is light at the end of the tunnel, that once upon a time I didn’t know a single person with epilepsy but now I have a whole support network, I know the charities will bend over backwards to help you in anyway they can, I know the team who gave you the news (also my team) are brilliant at their job...you are in good hands. I know the Epilepsy Society Volunteer talking to you now will do his best to help you take in as much as he can. I know that you find a way to live with this, you will also do things you never dreamed you would. I know all of this because I was you.
What I won’t tell you is that it gets better, because this condition is so unpredictable, I won’t tell you it gets easier because honestly there are days that it is as hard as that very first day. It doesn’t get easier you just get stronger, and by that I don’t mean that you don’t cry anymore or that you aren’t scared, because the strongest amongst us get scared and cry. It means that you find your own path with this condition. You learn to live your life in a way that maybe wasn’t planned but works with this condition rather than against it. I won’t tell you that this is going to be ok because right now it isn’t what you need to hear, and you probably don’t want to hear it. Right now it IS ok to cry and to be angry as long as you pick yourself back up.
If you follow in the path of so many (myself included) you will rebel and stop taking the meds because you don’t need it and you want to be 'normal', trust me from my own experience nothing good ever comes of it, spare yourself and loved ones the pain of this.
That same team who diagnosed you today have sat with me at a crossroads today in my own journey with this condition, words they said to me today rung as true as they did on my day of diagnosis "It just takes time."
Be kind to yourself, take care of yourself and when you are ready there is a big purple family waiting to welcome you with open arms, who will sooth every fear, cheer every victory and hold you in the darkest times. I know because I was you.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.