Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Misdiagnosed?
Mon, 06/23/2008 - 09:12Intro posts always seem to be little awkward, so I might as well get the awkwardness started. My name is Sarah. I'm 20 years old. I'm a junior in college and my major is International Studies. After I graduate, I want to join the Peace Corps and some day go to grad school.
Now for the reason I'm here.
I can't stop shaking right now. From what I've read, this is normal for a post-ictal stage, and after the tonic-clonic seizure I experienced on Wednesday I'm just grateful my brain is working at all. I've had myoclonic seizures for two years; I was always told it was either stress or a side effect of my medication. I'm bipolar and obsessive-compulsive, or at least that's what my doctors say. No one mentioned epilepsy until I had the t/c seizure.
It's scary to think that I'm not mentally ill. Sounds twisted, I know. But mental illness--and the idea that I have it--has been such a huge influence on my life. I got kicked out of a school because I was a bipolar. Supposedly that makes me a disturbing influence. I have identified myself as mentally ill for five years. I have endured teasing, religious ignorance, and medications that made my hair fall out. And what for? I don't know who I am without mental illness. I need to develop an identity outside it. I know that. But it did become my identity, and now it might gone.
I want to find other people diagnosed with epilepsy after being misdiagnosed with mental illness. I'd also love to hear from college students with epilepsy. And now, since there's no non-awkward way to end this, I'll say thanks for reading.
Re: Misdiagnosed?
Submitted by uberzwitter on Mon, 2008-06-23 - 10:43
Im sorry to hear you had to go through all that. I can empathize with you because I have never been misdiagnosed, then again, never very conclusively diagnosed- If you ask my parents, especially my father, he will say that all I need is a good psychatrist. Despite my nuero assuring me my activity sounds to him almost completely of an epileptic nature and one abnormal EEG, alot of the people around me have insinuated that it is "just stress" and that psychological help would cure me. It bothers me personally, since no one believes me when I tell them I don't believe that's the case and they roll their eyes and sigh. Look, even with epilepsy your still going to face teasing, prejudice, and medication to make your hair fall out. What I can most understand is the identity you have forged. You talk about it being gone, well, a new one one will take it's place. Although I am starting to struggle with that as well. Do you really want an identity based around your disease? My last years of college, since my first complex partials I have become more and more consumed by my epilepsy, perhaps because it doesnt get controlled, and time passes and things never get closer to feeling "resolved." When I first found out i was pretty optimistic about living a good life despite and barely thought about it unless I had a sz, and now I am obsessed. I see everything I do and will do through my epilepsy. "What if I travel to a remote area and someone steals my purse with my meds inside?", I think, "I'll have to tape them to my body obviously". Sigh. I regret the slow process that turned this tiny "thing" into a giant monster cramped in my room with whom I have tea parties now. Whether it is mental illness or epilepsy, this should not be so. Be happy you are losing that identity. Look at it like shedding your skin. Form a new one, not an epileptic one, just a new one. A healthy, happy person, with just something to control but not controlling them. Easier said than done, but think about it. I'm gonna need a REALLY BIG broom myself.