I was diagnosed at age 14 with adolescent onset epilepsy. Right away, the conversations in my immediate circle were all focused around how to help me feel "normal." My parents raised me to not accept limitations. They never handled me with kid gloves. They also never let on to their own worry or fear. No one in our family had seizures and so they did what they could with the information they had. And yet, they encouraged me to be the adventurer that I am. I continue to be in awe at the strength that must have taken.
Now here I am, 40. My seizures have changed, my sensitivity to meds has endured and increased, and I'm just finally admitting to myself and the world that I have epilepsy and it is most definitely limiting. There is a huge need for communication from the neurology community for "what to expect" information. There is a need for public education. Most importantly, there is a need for advocacy. I hope I can help with that.