Growing Up with Epilepsy
I was in the 10th grade when my parents took me to Nasik for my summer vacation. It was my last summer before leaving home to start junior college in another city. I was going to live on my own, make new friends and maybe even discover who I was. One night, I woke up to go to the washroom and came back frothing at the mouth, before losing consciousness.
The doctors diagnosed me with Idiopathic Generalised Epilepsy. The rules were clear. No drinking, no driving, not even swimming. I was 15. The diagnosis left me angry and frustrated. It didn’t matter if I actually drove or swam, I was just pissed off that I couldn’t do it. All sleepovers were suddenly called off, because I couldn’t afford to have an attack away from home. Since I lived apart from my parents, they were in a constant state of anxiety. Initially they would check up on me every single day after lunch and dinner to see if I was taking my medication. Everything around me just seemed to be reminding me of one thing - that I was sick, I was weak, and I would never get to be a normal teenager.
But the worst was yet to come. That same summer, as the vacation continued, I found myself sitting in my room day after day just crying. I didn’t even know what was happening to me. All the doctors had told us was that my mood would need to be monitored, they never gave any warning of what the medication could lead to. Eventually my father called them and told them what was going on and that was when he said “Oh I forgot to tell you, depression is a common side-effect.”
I don’t know how statistically accurate it is, but my doctor told me that among epileptic patients, accidents were the leading cause of death, and the second leading cause was suicide due to depressive symptoms [ed. Note: Studies have identified that people with epilepsy have three times the odds of suicide compared with controls].
Now I had to be put on medication for the depression as well, but quite soon I decided to wean myself off of it. It was really difficult because all my symptoms started to come back in full force. It was even harder because I wasn’t just dealing with my actual diagnosis, epilepsy, but also with something that was technically never my problem in the first place but just another problem caused by the treatment of the first problem. It’s something that’s not really wrong with you at all, but stopping your treatment isn’t an option either.
For the five years I was dealing with my epilepsy, I was also studying psychology. In my later years of college, I learned more about my disease and began experimenting more with my restrictions, becoming more lax about my drinking, for starters. I found out that in Britain, drinking is acceptable for epileptics, but not in America, so it’s more a difference in schools of thought than the actual results of drinking. That’s when I realised that the disease wasn’t controlling me, I was letting it control me. The whole idea of them putting these restrictions on you is not to ban the activities outright, but to let you know that you have to be very careful when you do them. Even when I told my doctors how many rules I was violating, all they said was “That’s okay, just be careful".
To be diagnosed with such a constricting disease at an age when you can fully understand its implications on the freedom you were just beginning to enjoy, is hell. To have to also deal with depression, one of the most hopeless experiences a person can face, is something I wouldn’t wish on anyone. What got me through was just the simple realisation that I didn’t have to let my diagnosis define me. I learned to laugh at myself and focus on the other things I could do. Although I credit my treatment for helping me recover, it was my sense of humour that helped me survive.
If you, or anyone you know, is having trouble dealing with a diagnosis of epilepsy, don't hesitate to reach out to us. An InnerHour therapist can help you.
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