5 Steps to Telling Others about Your Epilepsy!!!
Here’s the thing. There are many of us who want to be free of the burden of hiding our epilepsy but are afraid to do so because of prejudices. If your condition isn’t already obvious by the life your epilepsy forces you to live, you owe it to yourself to step out and shed the light on your epilepsy – in doing so, joining in the fight to end the stigma. There are a few ways that have worked for me, and maybe they could help you, too:
1) Accept yourself. I know. This can be the hardest step of all. For example, I lived for years feeling that I was a weirdo, “the other.” Somehow, I thought that I didn’t deserve anything I got and any successes were just examples of my fraud of a life. I was in hiding with misplaced shame and pretty successful at it, too (except when I had my grand mals!). Slowly, though, what was a self-image quagmire changed into anger about the situation. I understood why the stigma existed, but what I thought about myself because of it made me furious. Anger was my catalyst. I somehow stopped letting epilepsy define me and decided the best way to cement my newly found feelings was to talk about epilepsy and look for opportunities to educate others.
4) Try not to make too big a deal of it. Remember, you’re not only coming out of hiding, but also, even inadvertently, helping end the stigma by your example. Try to work it into a conversation rather than sitting people down to talk about it. For instance, I’ve found opportunities when others ask what my Medic-Alert bracelet is for or when epilepsy or another condition comes up. Also, in my case, I was able to sneak it in when chatting about avoiding alcohol, caffeine, etc. while I was pregnant. I simply added the conundrum of whether or not I should continue to take meds during my pregnancy. Jessica Keenan Smith, founder of Living Well with Epilepsy, has a good line when introducing the topic: “Oh, you didn’t know I have epilepsy?” Make it as casual as possible. Don’t let it appear to define you.