Have you ever played that icebreaker game in which you reveal your most embarrassing moment? If you’re a person with epilepsy, there’s a good chance your moment involved a time when you had a seizure. You could have been on a date, speaking to a large crowd, in a class, at work, walking down the street or doing any other daily activity. People with epilepsy know that seizures can happen at any time. They are unpredictable, can be embarrassing, and the stress of never knowing when they might occur adds to the complexity of the condition.
The dilemma of whether or not to disclose your condition is another issue for people with epilepsy. Some find their epilepsy is easier to manage when they are open and honest with family, friends and co-workers. Others are more private and, yes, embarrassed. If you are comfortable about sharing, however, and have prepared yourself for the possible repercussions of doing so, talking about your seizures can be a very good thing. Besides relieving yourself of the complete burden, it can help others understand epilepsy, prepare them in case something happens in their presence, and also disrupt the stigma and misconceptions that surround the condition.
Getting the conversation going may seem overwhelming at first. Try these conversation starters and you’ll be on your way to teaching others, opening minds, and having to look elsewhere for embarrassment.
In the workplace: “Since we’ll be working closely together, there’s something I’d like you to know. There’s a possibility that I might have a seizure while on the job. I hope it won’t happen, but if it does, I may need your help. Here’s how…”
With other parents: “Spencer really enjoys playing with Myles! Since they are spending time together, there is something you should know about Spencer.”
At college: “Since we’ll be sharing a dorm room this year, there’s something you should know. I have epilepsy, and it’s possible that I may have a seizure while I’m sleeping. Let me fill you in on the details.”
On a date: “I’ve really enjoyed getting to know you better, so I’d like to share something about myself to help you know me better.”
After you’ve discussed your condition with someone and allowed them time to respond, try moving the conversation to other everyday things, like a movie you recently watched. Epilepsy is only one small part of your life, so share the rest of your life with others too.
Written exclusively for EpilepsyAdvocate.com.