This post is sponsored by Eisai Inc.
What Does Seizure Freedom Mean to You?
Recently I attended a meeting with other epilepsy advocates. The topic of discussion was seizure freedom. When most people think about seizure freedom, they often think of a cure. A cure that does not currently exist for many. Yes, we believe there will one day be a cure, but what do we do until that day comes? To some people, seizure freedom means a life with controlled seizures or no seizures at all for an extended period. When I think of seizure freedom, I think of the freedom to live with seizures, with my epilepsy diagnosis, in part because I am on a medication that works for me.
I’ve lived with an epilepsy diagnosis my entire life. I honestly do not know what life is like without that diagnosis attached. I’ve always said that as soon as there’s a cure, I would do XYZ. Soon as I am entirely seizure-free, then I will do the next big thing I’ve always wanted to do. But honestly, what is the point of waiting? After losing my dad to pancreatic cancer in 2015, I decided that I would live life with or without seizures to the best of my ability. We spend most of our lives waiting until things correctly align before achieving our goals. I no longer wanted to live that way. Seizure freedom, to me, means to live freely with my diagnosis. To not take any moments for granted. It’s also important to continue to show up for doctor appointments, work with your doctors to get on a medication plan that works best for you and manage side effects effectively.
My goal is to get to a place where I can show others just how to achieve that level of freedom as well. Being a Patient Advocate in the Epilepsy community, I hear story after story of people settling, and accepting the diagnosis as the end to happiness. Let’s change the narrative. I understand that some diagnoses are more severe than others. But if we can do more, then let us do it. Make whatever adjustments with medication, food, lifestyle, but please don’t let it stop you. Whenever I am told that I can’t do things because of my epilepsy, I use it as fuel to do those things. It took a lot of planning and doing to get to the level of freedom I am at currently, but I feel as if I have a better quality of life because of it.
It’s time we look beyond just finding a cure. Set goals to achieve the level of freedom you desire. That could be getting your driver’s license, or moving into a new place alone, taking public transportation alone, working, cooking, traveling or whatever your heart desires. Let’s set goals and achieve them. And, importantly, step up and tell your healthcare provider everything that you are experiencing, from side effects to difficulty staying on your medication schedule. Be clear about what you need to better help manage your epilepsy. Let’s take control of seizures for the sense of freedom. For more information about epilepsy and starting the discussion with your healthcare provider about your treatment plan, visit EPILAPSEY.com.