Telling Others About Your Epilepsy
For millennia, there has been a stigma with epilepsy. Even in certain parts of Africa, it is still associated with being possessed by evil spirits.
But with knowledge comes understanding. We know seizures are episodes of disturbed brain function, and 10 percent of Americans will experience a seizure in their lifetime.
Still, there are misconceptions with epilepsy. By talking about it with your family, friends, coworkers and partners, you can 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. The website offer videos about how to talk to others about your epilepsy.
Celebrities like Jennifer Garner, John Mayer, and Jason Bateman are urging people to talk about epilepsy during dinner. Then again, it's not like they will come to your house and help you strike up a conversation with your family or partner over roasted chicken and mashed potatoes.
It's up to you to help others know and understand how your epilepsy will affect you. It's important to convey that you aren't looking for sympathy, but rather understanding. No matter who you tell, don't be embarrassed by what you have to say. It's your life, and you should be able to live it as comfortably as possible.
Telling Your Partner
Epilepsy in a relationship — whether you've been together for 20 minutes or 20 years — doesn't have to be a tricky thing. The other person cares for you, so 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 — like not driving and taking public transportation — while you find the right treatment, but it's entirely manageable.
Because some people with epilepsy experience sexual problems — men and women alike — it's important to discuss the effect epilepsy will have in the bedroom. From decreased desire to pain during sex, talking about these with your partner is better than keeping them quiet. Openness will lead to understanding.
According to the Epilepsy Foundation, many couples find resolutions about the changes in sex brought on by epilepsy by going to counseling with a trained therapist.
Also, if you've been planning on having a child, or at least have talked about it, explain that the vast majority of women with epilepsy have normal, healthy babies because of advanced treatments.
Telling Your Family & Friends:
Your family and friends can be excellent resources to overcoming your epilepsy.
They can provide strength during times of weakness, 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 seizure. It'll keep you safer as well as keep them prepared.
An expected question is, how did this happen?
It is very common, especially in cases where children have epilepsy, for parents to blame themselves. If your doctor was able to give you an answer as to why, tell your family. In most cases where causes are unknown, assure them it is 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 instead of hiding them.
Telling Your Coworkers:
By law, you are not required to share that you have epilepsy if you have total control over your seizures with medication. But 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.
Most jobs can be made safer with adjustments, such as 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 that won't affect your work — like taking the elevator instead of the stairs or avoiding unneeded driving.
Telling your supervisor about your epilepsy — especially the type and frequency of your seizures — is key to making your work days safer and more fulfilling.
Not everyone in the company needs to know. Explaining it to those you work with closely — like you did with your family — could be safer in case you have a seizure at work.