We speak so often about our battles…those of us who live with Epilepsy. We are the ones who fight the side effects of the drugs, we must deal with the effects of the seizures, we tackle the stigma that Epilepsy seems to carry and the reaction so many people have when it comes to living life with Epilepsy.

How often do we stop to realize the challenges our caregivers face? I’m guilty of this, I admit. I have a wonderfully loving and amazingly committed husband who only knew me for 11 months before I fell mysteriously ill, doctors telling him it was encephalitis and meningitis that was attacking my body. After I awoke from a coma, Epilepsy was the diagnosis for me, and frankly it was somewhat of a diagnosis for him. Like me, he had never heard of this chronic illness. He did everything possible to research the condition itself and the treatment options. He too lives with Epilepsy, even though it doesn’t attack his body.  I also regard our almost-5-year-old daughter as a caregiver of sorts. She knows what triggers my seizures and she has become quite the companion when we are alone…making sure Mommy feels OK and isn’t falling prey to a seizure.

We spend so much time lamenting over who doesn’t seem to care about our lives with Epilepsy. Why don’t people ‘Talk About It’? Why isn’t there more federal money available for care and research? Why does it bother people that I have this chronic illness? Why have I lost friends who don’t seem to understand how my life has changed? Do we spend enough time, thankful for what we do have?

Whether it’s a child or an adult, living with Epilepsy, there is a lot to tackle. I’m an intensely emotional person, and I take SO much to heart. I will yell, scream and cry if I realize that a relative or an old friend really has an aversion to me now because of my disease. But I know this can’t be helped. Only I live inside my body and know my own challenges. I must learn to choose my battles carefully. For every friend or relative who doesn’t have time to understand my world, there might be others who do. I cherish the chance to explain Epilepsy and my advocacy work to friends who do ask. It makes up for the people in my life who don’t ask.

I’m beginning to realize that many people who were close to me and are no longer in my corner might simply be afraid of the disease, and we all know what that’s like. So, I must remain positive and continue my advocacy work.

There are wonderful tips, straight from the caregiver’s heart, in an article from a 2009 issue of Epilepsy USA Magazine (The Epilepsy Foundation of America). Hopefully, we can all take a moment today and thank our caregivers.