“Epilepsy is what you have, not what you are,” reads a flier advertising monthly meetings of a Riverhead support group for people with the neurological condition. “Epilepsy is part of your life. It is not your whole life.”
Confronting stigmas and promoting an inclusive environment in which their illness can be discussed freely is key for members of the independent group, which meets the second Monday of each month from 7 to 8 p.m. in Peconic Bay Medical Center’s resource room, just off the main lobby.
“I think people are afraid of epilepsy in general,” said the group’s head organizer, a 51-year-old Riverhead resident who asked to be identified only by his first name, John. “They don’t realize how many different types there are.”
Founded in 2012, the support group is open to all people who suffer from the chronic disorder, which is characterized by unpredictable and recurrent seizures. Patients’ families and friends are also welcome.
“A lot of it is just friends catching up on what’s new,” John said of a typical gathering of the group’s five regular members. “It could be, ‘How have your seizures been?’ Or if someone has a medication change, we talk about that.”
Around three million Americans suffer from the disorder, according to the national Epilepsy Foundation. Notably, the term “epilepsy” isn’t indicative of the cause or severity of a person’s condition. Instead, the foundation states on its website, it’s a term ascribed to people who have had “one or more seizures that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.”
In 2003, when John began experiencing persistent déjà vu — an intense, neurological sensation of re-experiencing something that has already happened — the idea that he might have epilepsy didn’t cross his mind.
“I generally wouldn’t lose awareness or anything,” he said. “When I first noticed, it was happening a few times a day. I thought, ‘Maybe it’s a panic attack or anxiety.’ ”
John made an appointment with a psychiatrist, who prescribed anti-anxiety medication. But his feelings of déjà vu were only heightened. In 2005, he was diagnosed with epilepsy after visiting the emergency room when he began experiencing the phenomenon twice an hour. The finding came as a surprise.
“I think the perception is that epilepsy is dropping to the floor and shaking around like you might see in a movie,” John said. “That’s a classic stereotype.”
While John said epilepsy hasn’t altered his day-to-day life dramatically, he decided to attend a support group meeting a few years ago after reading an item about it in this newspaper. The group was founded by Charlie Peterson, a local man who died last year from causes unrelated to epilepsy.
“He started the group because there were no other groups that far east,” John said.
In the four years since it was established, the group’s participants have bonded over their shared experiences and struggles, formed friendships and provided advice.
And there’s always room for more members.
“You can sit there and say nothing,” John said. “You can just listen. You can get up and leave. We won’t be offended.”
For more information about the epilepsy support group or to recommend a speaker, contact John by calling 631-488-0928 or emailing [email protected].
Have a health column idea for Rachel Young? Email her at [email protected].