Epilepsy Awareness Month: Loneliness and Friendships

We had a wonderful dinner with friends on the first day in Southern California for our Epilepsy Awareness Day trip. We can only see them a few times a year so our get-togethers are non-stop talking and laughing and warm hugs!  We planned to finally take a picture of the four of us but completely forgot with all the chatting, laughing and eating way more than we should!

This made me think of how social Robert always was. He had a wonderful group of friends in school, was active in his church as an adult and then, when he lived with us, had so many friends at his Day Program and eventually at his facility. He was very social his whole life.

But Epilepsy can be lonely and isolating. Stigma still exists and people can also be uncomfortable around seizures.  People with Epilepsy may feel embarrassed when they have a seizure in public leading them to hesitate to go out with friends and family.

Anti-seizure medications can also contribute to these feelings. They can alter a person’s mood or make them drowsy which affects if a person wants to socialize.

A logistical reason for loneliness is some people with Epilepsy cannot drive. Sure, it’s great to have ride-share options these days but that costs money so it’s not an option people can use all the time. Public transportation can be available but that doesn’t lend itself to a spontaneous visit with friends and options in rural areas can be limited.

So Epilepsy can be lonely.

The Epilepsy Awareness Day at Disneyland Expo is not only about education but about community. Seeing people walk into the event I can tell they feel like they have found their people. Attendees have hope for seizure control for themselves or their loved one and with so many hospitals attending and doctors giving seminars and non-profits sharing information, the options are plentiful (although a bit overwhelming).

Richard and I and one of our other co-authors, Gincy, brought our 365 Caregiving Tips books to the event and thanks to a sponsor, NorthShore Supply, were able to give away our “Caring for Yourself” book at a table generously paid for by Other Brother.

The individuals and families stopping by were all looking for answers and support and they found it at this expo. Their strollers, wheelchairs or bags were overflowing with pamphlets, books, and trinkets and flyers from all the vendors.

People attended with their support group or their significant other or the entire family. It was clear how much people cared for each other and how they all wanted the best for their loved one. So many visitors at our table shared their story of medication changes, surgeries, seizures, and their own feelings of overwhelm.

Yes, Epilepsy can make a person feel lonely but people with Epilepsy can also be resilient and compassionate and caring and have terrific support systems. Robert loved attending these expos and it was weird not having him there this year. He was always the greeter at our table and loved to talk to the visitors at the table and even the people walking by! He would just talk louder if people walked by without stopping to chat – he assumed they just didn’t hear him!

Robert was our social butterfly.