Whether you are newly diagnosed with epilepsy or have been living with epilepsy for some time, the decision about when (and with whom) to reveal your condition can be difficult. There isn’t a rulebook about sharing you have epilepsy, so the choice comes down to you. In other words, what shapes your personal rulebook is how you feel and what your comfort level is with the people around you.
If you were diagnosed with epilepsy as a child, when you were young, you likely relied on your family members to tell people about your seizure disorder. And they told others what they needed to know to keep you safe. For an adult, though, relationships with people are more complex. When it comes to school, employment, friends, family, and dating, deciding who to tell (and when) can be overwhelming.
Here, we take a look at some of the reasons why some people keep their diagnosis private. And we’ll share the benefits of disclosing your epilepsy alongside ways to start a conversation — when and if you feel the time is right.
Living with epilepsy can sometimes cause feelings of embarrassment and issues with self-esteem. As one member shared, “Does — or has — anyone ever felt embarrassed about telling someone about their seizures?”
The thought of telling a new friend, employer, co-worker, or love interest about your seizure diagnosis may be scary or highlight fears of rejection. For those very valid reasons — and others — some people with epilepsy may choose not to disclose their condition.
A key theme among members who haven’t told others about their epilepsy is a fear of misunderstanding. “Because I have mostly focal aware seizures that went undiagnosed and misdiagnosed, I hid them for over 50 years. I didn’t want people to think I was crazy. I’m still shy about telling people because most people only know about tonic-clonic (grand mal) seizures, so I have to do a lot of explaining,” said one member.
Other members worry about embarrassment: “My simple partial seizures are easy to hide, but by the end of the day I am wiped out from holding in the largest adrenaline rush a person can have,” said one member. “I basically have to hold them in constantly because it’s not easy to release a variety of emotions in public (or even privately) without feeling self-conscious.” Another shared their concern about stigma, too, noting, “I never tell anyone I suffer with epilepsy, I’m too ashamed. People assume I’m going to collapse and swallow my tongue.”
Other members find that a lack of compassion from others keeps them from opening up. “I have gotten to a point where I tell people I have epilepsy, but when I have a seizure and get hurt, I always hide my injuries because of how I have been treated by doctors and by other people. I just stopped telling people things because I didn’t want to be accused of faking things or overreacting!” said one member, who added, “I don’t want to deal with being treated like a second-class citizen because they don’t understand my illness and don’t know what to do about it.”
While there are reasons you may not want to disclose an epilepsy diagnosis, research from the Epilepsy Foundation has found that talking about your seizure disorder in a positive light may actually make navigating relationships easier. And it may also improve your overall quality of life.
As one member who hid their epilepsy diagnosis said, “I feel like I’m living this double life.”
Disclosing the details of your seizure disorder in a positive light, through what’s known as assertive impression management tactics, can simplify things and bring about several other benefits.
As one member shared, “I have never been embarrassed about my epilepsy. When I go out with friends, they look out for me.” Another nodded to a sense of empowerment in disclosing their condition. That member said, “I don’t hide it, but I did when I was a teenager. Once I grew older, I just couldn’t care anymore. I am who I am.”
Others highlight the benefits of disclosing at work. “I didn’t disclose at work and then had my first full-blown grand mal in front of my new colleagues after seven years without one! Kind of freaked them out and it was much more of a drama than if they had known beforehand! Now everyone knows and it’s no big deal when anything happens,” they said.
Members have also reiterated the importance of safety as a key consideration for telling people about epilepsy: “Help your family and friends to understand what epilepsy is and educate them. Answer any questions they may have, but above all make sure they know to protect your head so it doesn’t hit any hard object.”
Going with your gut and taking conversations about your epilepsy at your own pace can help you decide when and who to tell. (Working the topic into a natural discussion is one low-key way to ease into the conversation.)
The Epilepsy Foundation gives some good conversation starter tips on how to bring up your epilepsy with friends, family, and co-workers.
The people you tell might not know a lot about seizures. Be prepared to answer a lot of questions they may have. Remember to give them time to process this new information. Many people may think that all seizures include the violent convulsions that are typically associated with “grand mal” (now referred to as tonic-clonic seizures), so letting them know that epilepsy often causes other symptoms instead may help them understand your medical condition better.
Because seizures can pose a risk to your physical safety, it is important to tell the people you spend a lot of time with that you have seizures so they can help you in case of an emergency. Some tips for disclosing the appropriate information include:
On MyEpilepsyTeam, the social network for people with epilepsy and their loved ones, more than 108,000 members come together to ask questions, give advice, and share their experiences with others who understand life with the condition.
How have you disclosed your epilepsy diagnosis? What steps do you take to educate others about your condition? Share your experience in the comments below or on MyEpilepsyTeam.