I Was Just Diagnosed With Epilepsy... Now What?
Last updated: September 2023
So, you have been diagnosed with epilepsy... What are your next steps?
When a new diagnosis hits, you will have everyone and their brother trying to offer you advice, information, and knowledge. And while knowledge is power, it is also very overwhelming. You will have so much time to learn, explore, research, and receive advice about epilepsy. Give yourself time and space.
Just diagnosed? Take a moment
Most of the time when a diagnosis is thrown our way, whether from an acute or chronic issue, we all immediately have the instinct to want to learn as much as possible as soon as possible, and honestly, it's completely understandable.
The biggest piece of advice I can give you is to take a moment. Allow yourself to have all of the emotions that come with a new diagnosis, whether it was one you expected or one that hit from left field.
Grief with an epilepsy diagnosis
Allow yourself to grieve. Grief with chronic conditions is longstanding and can happen in various stages of your life, but with a new diagnosis you may find yourself grieving who you were before you knew you had epilepsy – and that is okay! Do NOT feel guilty for grieving!
First, just take a breathe...
Take time to breathe! When I was newly diagnosed I had been going back and forth to doctors and in and out of hospitals for weeks at a time for almost 2 years and my head always felt like it was spinning, but not from the seizures, instead from the amount of time and energy the medical world had taken over my life.
So when I finally got the diagnosis of epilepsy, I stopped. I stopped and took a breath. Because although I knew there was much more to come my way I also recognized that the whirlwind of the undiagnosed phase of my life was coming to an end, finally!
There's plenty of time to learn about your epilepsy
You will have so much time to learn about your new diagnosis. You will have so many people telling you what worked for them and what did not. There will (hopefully) be doctors there to give you treatment options and next steps.
But this, this moment right here, this is going to be the moment you have to breathe. To just be. Just exist. The "you" who you were before diagnosis, amid diagnosis and then after diagnosis – it's all going to bring so many emotions, and even some grieving what was and what could have been. So instead of getting caught in the whirlwind of what will happen, just be in the moment.
Take it one day at a time
Breathe. Do some self-care. Go outside. Get fresh air.
Do anything that has absolutely nothing to do with the medical side of you. Because now is the time to remember that this diagnosis is not who you are. You are more. So much more. And there is more out there for you.
Things may change, you will learn and adjust as needed. But breathe in, take it a day at a time. And most importantly, do not forget that you are merely human!
Since being diagnosed with epilepsy, has your memory been impacted?