This week I'd like to touch on the subject of how having epilepsy is more than just having seizures. Epilepsy isn't just something that affects you during a seizure.
I've already written about the side effects of seizure medication and how they can totally change your life, so that can stay as a minimal mention here.
Since my first seizure at 16, the biggest effect that they have had on my life is a sense of embarrassment. Constantly trying to hide the fact that you have seizures or epilepsy in general is something that is always weighing on an epileptic's shoulders. After long enough, it becomes second nature to keep it under wraps. To the point that you don't even realize you're doing it anymore. Not everyone hides it or keeps it a secret, but from what my experience is with the community at large, the majority of epileptics prefer that nobody knows about their disability.
There is also the massive financial impact on the lives of those with epilepsy. Not only on those without insurance, but those with it as well. A trip to the emergency room costs upwards of $1000 just to walk through the doors. Not to mention the cost of tests, treatments, used equipment, and time stayed in the hospital. So any serious seizure that requires a trip to the hospital can be devastating financially to anyone. Early on in my marriage my wife and I didn't have insurance. My epilepsy medications costed over twice the amount we were paying in rent. In a time of particular financial hardship, I was forced to call on family for assistance in paying for my medication. Once we did get insurance, the employer raved about how great their medication plan under said insurance was. Only to find out that it covered a couple dozen dollars worth of medication per month. We still were paying over $800 per month for two medications. We also did our best to keep this a secret from most. Financial hardships can be just as embarrassing to those experiencing them as a medical condition that you want to keep hidden.
Hand in hand with the financial hardships is the inability to hold so many jobs. Want a job where you drive anything? Fly anything? Operate heavy machinery? Use certain types of screens? Sorry, but those are out of the question. Once those markets are cut out, you still have to deal with competing with those who don't have epilepsy. As if it wasn't already difficult enough to compete in today's job market to begin with, this makes it nearly impossible. I went for 7 years between jobs because I was unable to beat out others for even entry level positions.
I know there are many more problems with epilepsy that affect the lives of those who live with it. If you have some examples you would like to give, post about them in our forums, or leave a comment on this post.
Thanks for reading!