Hello. My name is Sita and I am an Epileptic.

facepalm
Hi Sita! I have never had a group of people say that back to me, as I have never introduced myself to a bunch of people like that. This blog is all about talking about the tough stuff. Ripping out the painful parts of your life and examining them. Were certain experiences meant to teach us something? Are we really on a track with a chronic illness? What does a track for someone who is chronically ill look like?

After moving back home when I got my degree, I slept for several months and then spent 7 weeks in hospital to try and figure out what was causing my seizures. I have had extensive testing done on my brain, and as of right now I am not a brain surgery candidate. It is discouraging. When I went to the hospital for 7 weeks last year I thought they would figure everything out and it would be a panacea for all of my seizure troubles.

I am a very extroverted person, and I will talk your ear off. Except when it comes to mentioning my Epilepsy to a potentially new friend. I have told you my experiences with stigma, and the myths that people have about epilepsy. When I tell someone new about my epilepsy, I worry I will be dropped like hot rocks. This has prevented me from continuing to try to make friends. I was also bullied through my entire schooling, except for university.

I refer to authenticity a lot throughout Life in Full Volume. Show your true colours. Tell your story. It’s just scary when you might be dropped like a rock if you are vulnerable.

Lots of love xox

 

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4 thoughts on “Hello. My name is Sita and I am an Epileptic.”

  1. thank you for this! its really true — whenever i try to tell anyone about the stigma they always try to reassure me that epilepsy isn’t anything to be ashamed about. but its not me that needs the convincing — i think im fab (then again ive never watched myself have a seizure :P). determining when to tell a person is so difficult because i’ve experienced dramatic shifts in behavior from people who knew me for months, and it always makes me sad when I get attached to a person and the way they treat me (usually like a competent intelligent person) pre-epilepsy aware.

  2. Sorry, you have to go through this, I try to tell people as soon as possible (sort them out right away…haha!) but I definitely know what you mean by shift in behavior! A couple days I told someone and he asked if I was actually allowed to kiss my boyfriend and I was like why wouldn’t I and he answered: Well, isn’t it contagious? I had a good laugh about it and kindly replied that when they build my brain they just hired the cheapest electrician they could find 😉 But this was a smart person with a good education. It’s crazy how much stigma there still is. Would you mind sharing what kind of testing was done during those seven weeks? Just out of curiousity on a professional basis. I used to work as a neurosurgical ICU nurse for more than two years (that was before I was diagnosed myself) and we occasionally did epilepsy surgery but spontaneously I can’t think of enough testing for seven weeks.
    Love from Germany!

    1. Hi Jenny!
      Sure I would be happy to share with you what sort of testing I had done. I had an Ictal Spect (three times because it didn’t work), a PET scan, sleep deprivation, a 2 hour MRI, an EEG with wires on my head for two weeks, and then 14 wires placed in my brain for two weeks. I think there was another test or two but I can’t remember. Haha I like your joke about having the cheapest electrician they could find in your brain! I am going to use it!
      Love back!

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