Talking About Epilepsy
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
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.
are many misconceptions about epilepsy. Talking about it with your family,
friends, co-workers, and partners can help clear many of those up.
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.
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.
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.
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.
Foundation, many couples find resolutions
to the changes in sex brought on by epilepsy by going to counseling with a
talked about having children, explain that the vast majority of women with
epilepsy have healthy babies because of advanced treatments.
Family and Friends
and friends can be excellent sources of support and encouragement while you
cope with epilepsy.
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.
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
question is, how did this happen?
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
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.
your family and friends to be open with any concerns and thoughts.
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.
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.
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.
supervisor about your epilepsy, especially the type and frequency of your
seizures, is key to making your workdays safer and more fulfilling.
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.