Do's
&
Don'ts
1. For most of us, it is quite OK to ask us questions about how we are coping with our disease and how we are doing emotionally. Being able to openly discuss having epilepsy can be such a freeing feeling for us. Constantly keeping this major part of our lives a secret in open society is a heavy burden at times. This kind of support in our everyday existence can be invaluable in our ability to cope with the disorder. Of course, some people prefer more privacy so you have to make a judgment about the individual and the context.
2. Along this line, please ask us any questions you have about epilepsy. It can be encouraging for us when asked, “So tell me what I need to do if you have a seizure.” It is a relief that you are not afraid and want to know how to help. Part of the difficulty in social or work situations for us is the constant fear that a seizure may occur and change a work environment, a social situation or a friendship immediately. Acceptance and support are so valuable when you have a disease that still has a stigma in today’s society. Help us make that change.
3. Please don’t use the word “seizure” as a joke. It’s really not a funny thing to deal with in our lives. Those of us who have had seizures may at times use humor when we are talking about them, and that’s OK. But remarks like, “Well don’t have a seizure over it” can be quite upsetting to those of us who actually do.
4. Please don’t use the word “epileptic” when specifically referring to one of us, for example, “She’s an epileptic.” This may seem like splitting hairs but this word was derived from the ancient Greek word “epilambaniem,” which meant “to be seized.” At that time in Greece a seizure was thought to be related to the individual being possessed or attacked by evil spirits, or being unclean. The epilepsy-evil connection would continue through several more centuries and across cultures. Unfortunately, negative. connotations and indignity related to epilepsy still exist in our current society. Due to such attitudes and the fact that we are so much more than just that one part of ourselves, many of us prefer to be called “a person with epilepsy.”
5. If a close friend or family member has just been diagnosed with epilepsy, you don’t need to feel helpless. You can empower yourself by taking seizure training courses. These classes teach you all the things you need to know about epilepsy and how to keep your friends and family safe when seizures occur. Go to the The Epilepsy Foundation in your area to find when the next set of training courses is available.
6. Medications can be difficult for a patient with epilepsy to get used to and endure. The drugs used can have strong side effects and it can often be a long and tedious process in finding the one or ones that can decrease or stop the seizures all together. The most important thing for you to do is be supportive and offer assistance and understanding. If you see pronounced changes in mood or behavior, make sure to communicate this to the patient’s significant other or family member immediately.
