Epilepsy can be a challenging tribulation, not only for an estimated 3 million Americans such as myself who battle each day, but in addition for all of the people in our lives taking the journey along side us in love.
I have battled epilepsy now for almost eight years and I know fairly well what it’s like to feel frightened and alone. I grew up in an environment, exposed to situations that no child, no young woman should ever have to endure. At 16, I encountered my first seizure. At 22, I was officially diagnosed with epilepsy.
I spent the next few years after my diagnosis restructuring my life and shutting the gate on my previous life. Building it in such a way that it would harbor good and lovely aspects and reflect this outwardly. Taking time to figure myself out. Being completely honest with myself and correcting areas that needed to be improved. I wrestled with feelings that were extraordinarily heavy and pain that I did not have the strength to turn my face towards. Then at the age of 30 years old, after what seemed like endless hospital stays, neurologist visits, and tests, I was officially diagnosed with Refractory Epilepsy.
After having untangled myself from multiple webs of depression, fighting off periods of anxiety, and finding that treasure box in my heart labeled “extrovert”, I began to take notice the toll that epilepsy was taking on my personal life.
There were some aspects that those closest to me understood, but not everything. It was not understood fully why independence meant so very much to me. To not feel as though I required a babysitter or caretaker. Or why taking part in certain activities that I personally enjoy, even voicing my like for that activity and in return, oftentimes receiving a severe, worried, comment of disagreement. It was not understood why I kept a lot of thoughts, feelings and emotions inside to avoid a negative response, unless I was ensured that I could be given the compassion, kindness and consideration a grown woman aught to be given.
If someone you love is battling epilepsy, here are a few things to remember:
1. We can’t simply “Get over it”
Epilepsy is a very complex condition. It extends beyond physical. It is also psychological. Epilepsy is masterful at convincing us that our lives are in shambles and we’re walking on land mine ground when we know we should not live our lives in melancholy panic mode. Once we’ve become tangled within this mode, it’s not as easy as just walking away. There’s no question that we would if given the opportunity.
2. Epilepsy is not who we are
If there’s one thing I know for certain, it’s that those living with epilepsy aren’t holding their hands out for pity and not being treated like a “normal” person can be hurtful. We long for compassion and understanding, not charity or putting up a front to appease. Epilepsy is merely one piece of the puzzle in our lives, not the entire picture of who we are. Though epilepsy is in our lives, we do our best to live normal lives and we ask that you treat us the very same way. Normally.
3. It important to us that you understand our battle
We want nothing more than for those closest to us to have a full understanding of us. We know that you may have not experienced a seizure personally. You know certain facts and details from what you have been told and learned in the years we’ve lived with epilepsy but personally, you could not relate and that should not prevent you from extending compassion and understanding. Never at any point do we intend to make life harder on anyone or burdensome. With each day we are given, we go straight back to war with our condition and defending ourselves. The only thing that we are able to do is walk in faith, one step at a time.
4. Don’t judge our methods. Ask.
With an epilepsy diagnosis comes triggers. Triggers are foods, beverages, activities, seizure stimuli (A certain object or event that evokes a seizure.) With triggers comes lifestyle changes. Eating differently, sleeping differently, avoiding foods/beverages you once consumed, taking part in activities you never had before. For some, people could consider this odd or out of the ordinary. The looks on their face will do the talking for them. They won’t even have to open their mouths. Do us a favor and leave the judgment and assumptions at the door. If you have questions, simply ask. We would be happy to explain what we’re doing and why we’re doing it so that you have a better understanding and aren’t left in the dark to stumble around of considering us having lost our marbles.
5. We are thankful for and appreciate you
Anyone who is battling epilepsy, we know full well the challenges that are set before the ones closest to us in order for them to handle it all. Yet, knowing that we have support along the difficult and rocky journey is so astounding and heart-warming. Right now, if you’re reading this, I want to take a moment to say thank you for all that you do and all that you’ve done. I appreciate your compassion and kindness that you have shown and continue to show as I take this difficult and rocky journey. By you taking the time to understand and learn more about what it is that we go through as individuals living with epilepsy touches my heart and lets me know that there are so many more out there that are ready and willing to open their hearts and minds to those who are in a battle they neither asked for or can control. Thank you for standing by our side through the best of times and even the worst of times in this journey. Your support is priceless.