What I Would've Told Myself the Day I Was Diagnosed With Epilepsy
So you’ve finally got the diagnosis.
You’ve finally been listened to! You’ve not been imagining it all.
It’s real.
You will always associate Bombay Bicycle Club’s “Flaws” album with this day — this day you sat waiting for the diagnosis you knew would come, and the day you sat afterwards too frozen to swallow the information. Although it will bring back memories of fear of the unknown and overwhelming loneliness, when you hear those songs in future days to come, they will also remind you of how strong you are and how far you’ve come.
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You will forever remember the kind nurse who seemed to be waiting for you like an angel as you floated out of the consultant’s room, ears ringing with the echoing words: “You have epilepsy.” You will forever remember her describing the different types of seizures — all of the weird things you brushed to the side thinking they were all in your imagination.
This is the beginning.
After 10 years of suffering, you’re finally on the road to somewhere! Finally knowing what is wrong with you will eventually also be the key to discovering who you are. There are great things ahead. You will finally move to London; you will finally meet the man of your dreams; you will finally use your gifts to tell the world your story.
But for some things — this diagnosis means the end.
Times will get dark.
You will have to learn to live on medication, and there will be times when grief, post-seizure fogginess and darkness will overwhelm you so much, you won’t want to get out of bed.
I haven’t yet met anybody like us, and as much as you attempt to educate people, there will still be people who judge, point and take a few steps back whenever they see you in a fit because they don’t understand.
You will lose a lot, including many of your memories — but you’ve noticed that already, haven’t you?
Worst of all, you will lose your family. You will be stigmatized, and this is the beginning of a long road on which they will not be willing to walk with you.
But that’s OK.
You are strong.
You will get up from the waiting room chair and walk out to meet an entirely new family. You will find people who are willing to walk with you.
It’s going to be tough, but it’s also going to be OK. You’re going to be OK.
Image via contributor
Lexie is 35 years old and was diagnosed with focal onset epilepsy when she was 27. She lives in London and after losing her job as a Trainee Teacher, has now committed herself to raising awareness for disability discrimination and Black Mental Health awareness. She is currently working as a trainee psychotherapist and loves to write in her spare time. Poetry, short stories and blog writing are outlets for her depression (as well as excessive amounts of sweets!).
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