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Sorrow, Shame, and Guilt
Fri, 02/17/2006 - 08:16To every member of this community,
Thank you all for posting your eloquent and provocative messages.
It's taken me a long time to begin to accept my epilepsy. I've had a great deal of shame about having it.
After I have had a grand mal seizure (the only kind I have), I feel three very strong emotions. Firstly, I feel a great sense of sorrow that the length of time I haven't had a seizure has been cut short. Secondly, I experience a deep sense of shame if my seizure has been witnessed. And, thirdly, I feel regret at being a burden to others - and I always say "I'm sorry".
The main factor that has helped me to come to terms (to a degree) with my condition has been the loving acceptance of my wife of 22 years, who passed away two years ago, and now my girlfriend of 1 year. I feel fortunate for having such wonderful mates.
I am happy to have discovered this community of people trying to deal with their epilepsy. It is good to feel that one is not alone. And I know that, no matter how understanding my family and friends are, only someone with epilepsy can truly understand and appreciate what emotions I am feeling.
Good luck to you all in your struggle to deal with your epilepsy and in overcoming in others and yourself the stigma that often accompanies it.
Joel
Comments
Re: Re: Sorrow, Shame, and Guilt
Submitted by helenpe1 on Fri, 2006-02-17 - 19:15
Joel and Christine you echo all my feelings. It gave me a lump in my throat Joel, when I read your description of the emotions you feel after a seizure. You could have been talking for me.
It is SO nice to feel that there are indeed others who truly understand how I feel. And I always say "I'm sorry" too - I'm glad I'm not alone in that.
Re: Sorrow, Shame, and Guilt
Submitted by Megan1373 on Fri, 2006-02-17 - 19:28
I have Grand Mals as well and I go thru so many dif emotions after a seizure. I even feel like my personality has been altered for a few days afterwards. The physical affects after a seizure are bad enough, headache sleepiness, nausea, but the emotional state Im in is worse it seems. I don't feel ashamed I guess, cuz everyone knows I have it. I feel a lil embarrased especially with the incontinence, I feel as if I am a independent person and the need for others affects me greatly after a seizure. I am usually depressed for a week or so and then stuff starts getting back to normal again. You are definately not alone. I feel that way too sometimes but then I come on this site and realize what a great bunch of ppl I have met.
Re: Sorrow, Shame, and Guilt
Submitted by cjcurls on Fri, 2006-02-17 - 08:39
Oh Joel! You are most definately not alone. Your sentiments regarding your immediate feelings "post seizure" are exactly what many of us feel. I always say "I'm Sorry" - because I know that my day is now over & I often "ruin" plans or cause others to re-arrange their schedules to accomodate me. I'm always embarrassed and ashamed because somehow I feel like I have somehow asked for their sympathies. I too, rely on the support of my spouse. He though cannot always understand the emotional side of this disease. He understands the physical side, but cannot grasp my sense of loss when I try to discuss my loss of control, my loss of life. Writing is always an outlet for me - any source of self expression is helpful. Though my words may not adequetly convey what my heart truly feels (due to my loss of words) I always feel better after posting. We're all here for one another. Email me anytime. Christine