At PatientsLikeMe, we believe in getting to know the person, not just the patient. To celebrate the launch of the new epilepsy community this week, we sat down (virtually) with 3-star member, Blueyedgoddez. Here’s what she has to say about her experiences living with epilepsy:
|(PatientsLikeMe) First, welcome to the PatientsLikeMe epilepsy community! Cool username, btw. How did you choose it?|
|(Blueyedgoddez) I have blue eyes and I sometimes feel like a goddess, as silly as that may sound. I don’t mean a goddess as in a rich snob or anything. I mean it like an earth child, that sort of thing.|
|(PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?|
|(Blueyedgoddez) I had seizures since infancy, however i was officially diagnosed at the age of six. When I was a child, it was difficult in certain ways. Mostly because I knew I could never enjoy certain things that children enjoy – i.e., video games (at that time the resolution of the games were too high, the graphics would induce seizures), rollercoasters, the gravatron (at the carnival), any type of flashing party lights, among other things. As an adult, it’s not that much easier. I can’t drive under no means because where I live you need to be seizure-free for 5 years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child. The people I work with tend to say I use my epilepsy not to do things. How could anyone say I use Epilepsy to my benefit? To me it’s very hurtful. It makes no sense. Also one other thing that seems to bother me as an adult is having children. I was told it’s going to be very difficult.
As you can see by now, it’s a journey having epilepsy. However, in the end, you learn to live, laugh and love – despite all your perils.
|(PatientsLikeMe) How does epilepsy impact your every day quality of life?|
|(Blueyedgoddez) The disease in itself isn’t what really effects my day to day activities, however it’s more the side effects from the medication to treat my epilepsy. Everyday I’m bound with multiple side effects such as, fatigue, headaches, depression, anxiety, aches and pains, nausea, the list could go on. Some days I wake up fine, others not so fine. I have my good days and bad days.|
|(PatientsLikeMe) What inspired you to join the PatientsLikeMe epilepsy community?|
|(Blueyedgoddez) I joined because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me, more or less. That’s why I’m here to be helped and to help others. I have a voice and I intend on using it.|
|(PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!|