Talking About Epilepsy

Written by The Healthline Editorial Team | Published on November 14, 2014
Medically Reviewed by Kenneth R. Hirsch, MD on November 14, 2014

Talking About Epilepsy

For millennia, there has been a stigma associated with epilepsy. According to the Keck School of Medicine, the sometimes-dramatic symptoms of a seizure were historically associated with a variety of superstitious stigmatizations including supposed demonic possession. Misunderstandings like this have led people to simply avoid or even shun those with epilepsy in years past, and although most people in the modern world do not associate seizures with the supernatural, stigmatization of persons suffering from epilepsy persists.

As with most prejudices, the hope is that with knowledge comes understanding. We know now seizures are episodes of disturbed electrical activity in the brain. According to the Centers for Disease Control and Prevention (CDC), 1 in 26 people will be diagnosed with epilepsy in their lifetime.

Still, there are many misconceptions about epilepsy. Talking about it with your family, friends, co-workers, and partners can help clear many of those up.

Even Hollywood actors have promised to talk about it. TalkAboutIt.org is a website dedicated to getting people to talk about epilepsy, backed with the support of numerous celebrities, including Jennifer Garner, John Mayer, and Jason Bateman. The website offer videos about how to talk to others about your epilepsy.

It's up to you to help others know and understand how your epilepsy affects you. It's important to convey that you aren't looking for sympathy, but understanding. No matter who you tell, don't be embarrassed by what you have to say. It's your life and your well-being, and you should be able to live it as comfortably, safely, and normally as possible.

Telling Your Partner

While broaching the subject may be difficult, talking to your partner about epilepsy is important for the health of your relationship. Remember that the other person cares for you. The more definitive answers you can provide, the easier it will be for both of you.

Explain that with the right treatments and medications epilepsy is a disorder than can be symptom-free, even if there is no cure. You might have to alter your daily routine while you find the right treatment, but in the vast majority of cases, it’s entirely manageable.

Some people with epilepsy experience sexual problems. Sexual dysfunction may be due to the epilepsy itself, the medications used to treat the epilepsy, or the psychological ramifications of the reactions of partners or others to knowing you suffer from epilepsy, and it can occur in both men and women.  It's important to discuss the effect epilepsy will have in the bedroom. From the possibility of decreased desire to the potential occurrence of actual pain during some aspects of sex, talking about these issues with your partner is better than keeping them quiet.

According to the Epilepsy Foundation, many couples find resolutions to the changes in sex brought on by epilepsy by going to counseling with a trained therapist.

If you’ve talked about having children, explain that the vast majority of women with epilepsy have healthy babies because of advanced treatments.

Telling Your Family and Friends

Your family and friends can be excellent sources of support and encouragement while you cope with epilepsy.

They can provide strength during times of active illness or depression, as well as support when you need it most. In order for them to do this, you have to tell them if they don't already know.

If you're comfortable, explain treatments and procedures, as well as lifestyle changes you will be making. It could also be very beneficial to explain what they should do in the event of a witnessed seizure. This information will help them to be better prepared and can minimize your risk of seizure-related complications.

An expected question is, how did this happen?

It’s very common, especially in cases of epilepsy in children, for parents to blame themselves. If your doctor was able to determine the underlying cause, tell your family. In most cases where causes are unknown, assure them it’s no one's fault.

Seizures can be scary to children, and they might not understand what is going on. Take time to address each of their concerns and use language they can understand.

Encourage your family and friends to be open with any concerns and thoughts.

Telling Your Coworkers

By law, you are not required to share that you have epilepsy if your doctor believes your seizures are under control with medication. If your work involves situations where you or someone else could be injured, like working on ladders or driving heavy machinery, you should explain what you're going through.

However, your doctor is required by law to report your seizure to the DMV. Different states have different laws around epilepsy and driving, but typically your driver’s license will be revoked for a period of time until your doctor believes your seizures are under control.

Most jobs can be made safer with adjustments like helmets for those working in heights or automatic shut-off devices for those working with machinery. Smaller changes at work can be made to prevent unnecessary injury, such as taking the elevator instead of the stairs or avoiding unnecessary driving.

Telling your supervisor about your epilepsy, especially the type and frequency of your seizures, is key to making your workdays safer and more fulfilling.

Talking with the people around you about your condition doesn’t only help them understand it better, it helps you to cope. You can break down your own preconceived notions about the seizure disorder and overcome embarrassment or shame by being open about it and accepting it yourself. 

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