self-guilt

[petero]

from http://www.epilepsy.org.uk/about/st-valentine-epilepsy-patron-saints

do you still get the feeling there is a lot of epilepsy blame placed on the person - unlike other conditions?

it seems like E has had an awful lot of association with demon-possession and things that other conditions just have no relation to whatsoever

am I misled in thinking there is a large contingency of people in the world that still think along these lines?

I guess I have a lot of seizure guilt - like, asking myself how I'm at fault for my seizures happening, to the point of it becoming a self-blame-obsession

I have adopted a more healthy lifestyle, but having another seizure each time shouldn't be a blame-burden on myself for not having done enough (or worshiped enough, as some religious fundamentalists might say) to have made my seizures stop completely

maybe I'm being selfish in assuming people experiencing a wide variety of conditions or diseases don't experience this same thing - but then again epilepsy seems to be one of the least-understood conditions, as far as origin is considered

 

[travel bug]

I think even among enlightened people who know better than to think people have E as a punishment from God still seem to blame the patient somehow. I never felt guilty about having seizures, but I felt like somehow I was being blamed or seen as weak. Back when I was still new to E and unsure what to do afterwards, I went to the ER a couple of times. I know now that that isn't necessary, but I was terrified when, after the simple partial motor seizures passed, I couldn't lift my head off the floor. The doctors acted like I was just looking for attention, gave me a sheet that told about breakthrough seizures which basically blames the patient for not taking their meds as they should. If any of the doctors I dealt with along the way would have just taken a few minutes to explain the different things that can happen during and after a seizure, and explained when and if medical attention was needed, I wouldn't have wasted anyone's time. I had one doctor tell me, 'You have a brain tumor(which I knew), brain tumors cause seizures. Even if you have it removed you'll likely have scar tissue which can also cause seizures." It was like it was all he could do to keep from saying, "Get over it!"

I think that's why I don't like the term "fit"; it sounds like something you have control over, and, therefore, if you have one it's because you just want to get attention or that you just don't have enough self-control. These days, people think of lack of will power or self control in the same way people used to think about not having enough faith. Either way, the person dealing with E is unfairly blamed. There is still a lot of education that needs to be done. Sadly, that education is needed even among those in the medical community.

 

[C0urt]

blamed ? guilt ?

Why me?

Why not me? Has always been my thought. There are a limited number of people who can actually handle this crap and keep going.

 

[Maisy]

Suppose over the past few months i have been like that, and ive told people so that ive felt ive let them down, failed them in some way,been a nuisance, but im starting too think as above well why not me? it isnt the end of the world, and at least we can still walk and talk and function 100% for the most part could be way way worse.

 

[petero]

I know smoking is not healthy. But I smoke - I've smoked for 20 years or so. I've never smoked more than a pack a day, and lately have gotten down to maybe a half-pack a day. But it seems my family (and my girlfriend just said it outright today) imply "quit smoking and your seizures will go away".
This isn't a beneficial sentiment and definitely fuels the "you're entirely to blame - fix it, loser" mentality.
This is contrary to progress I believe I've made of not letting my epilepsy dominate my life, since my diagnosis. It has been bad enough when I'm losing touch with reality thanks to seizures... and the sentiment seems that my reality is entirely wrong, and entirely to blame.
I've made big changes to my life and health since diagnosis and yet a couple weeks ago I had a massive seizure period, 6-7 tonic-clonics, where I was probably 'status' and it was probably the worst seizure period I've ever had (yet strangely not with as much pain as I've had before... but the worst tongue gnashing I've ever had)
No wonder depression comes hand in hand.