The best advice a neurologist once gave me, and words I have never forgotten, was to make sure you appoint someone your personal advocate or your Partner in Care as you journey through epilepsy.

As I participated in last week’s Metro Detroit Area Epilepsy Today Conference, I was able to mingle with many people, those who deal each day as an epilepsy patient, parents of children with epilepsy, nurses and social workers. I was startled by the number of people who live with epilepsy and suffer alone. They conquer the side effects of the medications by themselves, they tackle the aftermath of seizures alone, they rarely let others in on the ramifications of their condition because they are fearful of being cast aside. To me, this is an absolute shame.

Everyone who has epilepsy needs an advocate or a “Partner in Care”, whether it’s a spouse, parent, best friend, neighbor or simply someone you know you can put your faith in and trust completely. This person should be with you at neurologist’s appointments to ask the questions you might forget or be too timid to ask! This advocate is someone who questions the effectiveness of your anti-epileptic medications when you aren’t feeling so good.

If we’ve all learned something through suffering seizures, it’s that we can’t go it alone. You don’t necessarily need someone to pity you, but support and advocacy makes all the difference in the world.