Building a Bigger Circle of Support When You Have Epilepsy

People with epilepsy often get by with our friends’ support. Or is it our family? Or are they one?

As I’ve walked through life, my needs have changed. As a child, I needed the care, feeding and guidance of my parents. As an adolescent, my friends were everything to me, my mother became even closer and my father more distant. When epilepsy entered my life at age 18, my parents once again became the drivers for my care. But this is just my story.

In his book, “A Mind Unraveled,” heralded writer Kurt Eichenwald tells of the “family” he found in his roommates at Swarthmore College. They looked after him during seizures and were his advocates in the world outside their dorm room. These were acts born of desire to protect one’s own, and even artificially thrown together with them as a roommate, Eichenwald had become a part of their family. It was exhausting though, and the caregivers could only take so much.

Other relevant stories:
• Can Epilepsy Kill You
• Is Epilepsy a Disability
• Is Epilepsy Contagious

His story is a lesson we all could stand to keep in mind. Our caregivers, our family by birth or by friendship, can be drawn on for the basics of life, strength, support and friendship during our most difficult times.  And in the case of those of us with epilepsy, we often need them for the most difficult years or much longer, even full lifetimes. But we also need to care for them as best we are able, making sure they have what they need to survive all we ask of them.

Perhaps a way for us to do this is to build our support system, our “family,” loving them for what they give and mindfully asking for what kind of support we need from each individually. Is it physical or emotional? And if the latter, do you need someone who will empathize or someone who will help you solve whatever troubles you? Do you need rides, food or other sustenance if stuck at home – and for that matter, must you rely on family to get them? The trick is to find additional sources.

If we are unable to support ourselves financially, then perhaps parents or spouses can care for us. If we need cheering on, however, sometimes these same people don’t have the energy left to do it, and we can draw from friends or associates from work or community groups. If we are able to afford it financially, we can take advantage of car services and home delivery from supermarkets. If we don’t have the money, we can look for government- or nonprofit-sponsored services such as rides for the disabled or resources provided by local affiliates of the Epilepsy Foundation.

When we draw on non-family members, we put ourselves out there.  Many of us hide our epilepsy or shy away from others out of fear that we’ll have seizures. Perhaps in expanding our support beyond our family of relatives, friends and associates, we might grow.