IT’S HARDER ON US THAN IT IS ON YOU

I was recently banned from posting on Reddit. I am not sure exactly what I did to get banned (although it was insinuated that my blog about “Breast Cancer Month” did not go down well with some people.) Bear in mind, this is a website that is fond of holocaust deniers, sexists and racists. But me? I am not allowed to post anything there anymore. Not even a comment on someone else’s thread. Not even a simple “Hey that was great.” My emails to moderators go unanswered.

My website still seems to be relatively popular on Reddit — for an epilepsy website. As you might expect, epilepsy is not a particularly “big market.” But if you go to r/epilepsy, “FallingDownFunny” is the website that gets the most attention. But that doesn’t seem to matter to the folks who run Reddit. They don’t want “FallingDownFunny” there anymore. And they sure don’t want it on r/health. Epilepsy is the one disease NOT mentioned in the links on the side.

I bring this up because I was told the day I got off (I went to a coffee shop and signed on with a different email address) that I “brought it on myself.” I am “too angry” and should write “nicer things” about epilepsy. Fair enough. I am sure I sometimes come across as a bit of a jerk. But I have epilepsy and I want people to wake up and treat epileptics better. I don’t think that’s too much to ask. That is why I have chosen to write a blog on epilepsy.

Am I wrong? Are epileptics, in fact, being treated great all over the world?

Numbers for the United States were hard to get, but epileptics in Australia are among the lowest wage earners in the country (1). A 2012 survey in the United Kingdom showed that epileptics having a seizure are often the victims of crimes; apparently English criminals have figured out that during a seizure, not only can the victim not fight back but also they cannot recognize their attacker (2).

Surveys show that people believe epilepsy is contagious (1). People believe epilepsy is so dangerous that seizures will cause inevitable workplace injuries. As a result, many employers do not want to take a chance on hiring an epileptic without a certificate guaranteeing that a seizure will not occur (1), something often impossible to guarantee as thirty percent of us are never fully controlled (3). I myself have been fired several times and been told, to my face, that it is because of my seizures that I am being let go. I, too, have been asked for a neurologist’s letter before being hired.

So am I a little worked up about epilepsy and the injustices that accompany it? Yes, I am. I think I speak for epileptics all over the world when I say that it is not we who need to “get over it,” but everybody else. There are 65 million of us in the world (3) and we are getting a little tired of having to prove that we are good enough to share the same living space and same work space as everyone else.

We realize it is not an easy thing to watch one of us have a seizure. But, believe me, it is a lot harder on us than it is on you. We are the ones who have to have it. Maybe, instead of coming up with ways to get us out of your lives, those who are uncomfortable with seizures could try to be a little more understanding about something that we have no control over. After all, we are the ones who are falling down.

1 – http://news.smh.com.au/breaking-news-national/epilepsy-sufferers-discriminated-against-20110920-1kib0.html
2 – http://www.bbc.co.uk/news/uk-scotland-18334718
3 – http://en.wikipedia.org/wiki/Epilepsy