Why Fighting Epilepsy Stigma Starts From Within

The time has come for innovation. I’m not talking about in technology, but rather in how we fight to change the perception of epilepsy in the general public, fight the stigma. We’ve tried a handful of strategies…

• We fight prejudice in the workplace, where many of the most egregious sightings of prejudice reside.
• We use social media to advertise the prevalence of epilepsy, saying that 1-2 percent of the population has epilepsy at any given time and an astounding 1 in 26 will experience epilepsy within their lifetimes.
• We try to get personal stories out there.  But most often, they’re about our hardships, not about how typical our lives might be on balance. (After all, is anyone truly typical?)
• We struggle with how to get those among the 70 percent of us who have controlled seizures and hide their condition to begin to talk about their epilepsy.
• We hold walks and other events to raise awareness and funds.
• We try to educate the general public on how to respond to seizures, on how to help us.

I’ve not heard that they’ve worked well yet.

As for me, my thinking was turned upside down during a recent brainstorming session on reducing stigma with five members of the Epilepsy Foundation New England community, one from the national Epilepsy Foundation, and a local business school’s six alumni with marketing backgrounds participating. The headline outcome: the epilepsy community should stop talking about stigma. We shouldn’t even use the word. In many cases, attention is drawn to the issue by those of us whom researchers say experience “felt” stigma vs. stigma “enacted” by others. In other words, to a large extent, we are the ones who unwittingly perpetuate the stigma.

In many, perhaps most regions, the majority of people don’t truly look down on us.  Sprouting from our own unmerited shame, we can misinterpret many different reactions others may have when they learn we have epilepsy. Do they display an element of surprise that feels like blow-back on us?  Not knowing of the language subtleties, might they refer to us as “epileptic” and our seizures as “fits?” Do they unconsciously anticipate that we might have a seizure right then, and they won’t know what to do? That’s frightening, and they may have other emotions at play. Yes, it’s possible certain people might harbor old-fashioned prejudices, but there are fewer and fewer of them. Why then would we bring stigma to someone’s attention who may not know of it? They likely won’t advocate for us. But might they slowly be infected by it as they mull over the issue? Probably not, but maybe.

I believe we need to innovate our strategy. Let’s first call for an attack on ways we inflict prejudice against ourselves. Where did we first get it and what damage is it doing to us, even by psychological extension? Second, how do we get  those now in hiding whose seizures are controlled to start telling people about it? I wish I knew. I believe the greatest need is joining together as a community to determine new strategies to destigmatize ourselves and others with epilepsy from our own prejudices.

To say the least, all ideas are welcome.