This post is part of the Epilepsy Blog Relay™ which runs from November 1 through November 30. Follow along and add comments to posts that inspire you!
A month ago, I spoke with Jason Baranello, who, at 32, happens to be a Millennial (someone born into a generation thought to have born between 1982 and 2004*, though some consensus data differ slightly) . He was diagnosed with tonic-clonic epilepsy when he was 19… and didn’t know about the stigma. In fact, 13 years later, and having never hid his epilepsy, he still hasn’t experienced one.
Our conversation stuck with me. Jason is a smart person who is completely aware of the complex interplay of truth, myths, and social constructs around him. He had his first seizure when in college and has had a full life, enjoying controlled epilepsy. He is thoroughly integrated into society, one that he reports never makes him feel diminished when he tells any of its members about his epilepsy. “They’re supportive,” he says. What, then, is so different about Jason’s experience than almost everyone else’s?
Possible Trend: Millennials Are Less Judgmental than Others
I began poking around, asking any and all with epilepsy about their experiences with the stigma and how people react to them when they tell them about their seizures. I realize my research methods leave a lot to be desired, a-hem, but I did spot a trend: Seemingly, Millennials are less judgmental of others. A number of researchers site the trait, playing out in regard to race, ethnicity, religion, sexuality, gender identity, etc. Could these more tolerated groups include neurological disorders? After all, if they are making choices in their lives based on their own circumstances, lifestyle choices, and predilections, why should they ask anyone else to do or be anything in particular? Reading through responses from 30 people and comparing those from different generations, I found Millennials were more likely to say that they didn’t encounter much of a stigma, that they were open about their epilepsy, and almost always that if someone reacted negatively “that’s their problem.” And, if this is indeed a real trend, then that’s progress!
Question: Are Self-Perceptions Affecting Others’ Perceptions?
The next question: Are the attitudes of these people when revealing their challenges to those without epilepsy having an impact on how the others react? Are they self-assured and unapologetic? Is it a lovely circle of acceptance, both that of oneself and that of others?
Question: What About Fear?
But that’s not the only question. What about fear? This week, I corresponded with a woman (Yes. A Millennial.) who, despite sensing that no one in her generation looks down on her, still feels isolated by others’ fear that she will have a seizure around them. So, there’s the next hurdle: fear of the scary for those without epilepsy. Of course, we need to educate people on how to help someone having a seizure – in itself, a relief for those who feel helpless when called on to do so - and assure people that it’s not contagious, a sign of possession, etc. And if we have a chance, a little instruction about the whys and types would be good, too. And then there are the videos of different types of seizures. But there must be more we can do. I’ve been corresponding with now retired stigma researcher Dr. Anne Jacoby, formerly from the University of Liverpool, UK, about the use of videos and hope to find out more.
So that’s where I’ve gotten. Headline news: The future of reducing prejudices against epilepsy may lie with Millennials!
And if this indeed is true, a profound "thank you," our friends.
* 2012, Neil Strauss and William Strauss.
NEXT UP: Be sure to check out the next post tomorrow by Kathleen Dale at http://www.livingwellwitheplilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.