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NO! I DON'T WANT PITTY..... I WANT UNDERSTANDING & SURPPORT
Thu, 09/22/2011 - 14:23DEAR FRIENDS,
I HAVE NOTICED THAT, I GET PITTY AND SORO WHEN EVER I TELL SOMEONE I HAVE EPILEPSY!! HOW WOULD YOU DEAL THIS? IAM FED UP OF THE SAME OLD FEELING..
BUTTERFLY17
Comments
Re: NO! I DON'T WANT PITTY..... I WANT UNDERSTANDING & SURPPORT
Submitted by hnubtshiab on Wed, 2011-10-05 - 00:18
I haven't told many people for fear that they will pity me. I hate it though. Why do I constantly feel like I have to hide this part of me. It becomes so burdensome. Yes I have seizures. So what.
All of the people (not a lot) I've told have actually been supportive or really don't care/say much. My family know but don't say much about it. Some ask how I'm doing but that's about it. My one friend knows and has been supportive. I told my mother-in-law in passing when she asked why I couldn't drive and she didn't say much.
I told my friends who always give me a ride that I have seizures. It went something like this..."Hey, thanks for always giving me a ride. I can't drive because I have seizures so I really appreciate it." I said it with a smile and in a way where it didn't seem like such a big deal which I think helped to put them at ease. There were a few questions about whether I fall and convulse like they see in the movies (no because I have complex partials) but that was about it. They haven't brought it up since then, although they do offer to drive more often than before.
I think it's helped that I mention it in passing or with a smile. If I don't make it a big deal or look sad, other people may not convey it to be a bad thing.
When I do get pity or fear is when I have a seizure on an unsuspecting individual, like my boss. It scared her so much that afterwards she treated me with kid gloves.
For some reason though, I'm still scared to tell people because I don't want their pity, attention or fear.
I haven't told many people for fear that they will pity me. I hate it though. Why do I constantly feel like I have to hide this part of me. It becomes so burdensome. Yes I have seizures. So what.
All of the people (not a lot) I've told have actually been supportive or really don't care/say much. My family know but don't say much about it. Some ask how I'm doing but that's about it. My one friend knows and has been supportive. I told my mother-in-law in passing when she asked why I couldn't drive and she didn't say much.
I told my friends who always give me a ride that I have seizures. It went something like this..."Hey, thanks for always giving me a ride. I can't drive because I have seizures so I really appreciate it." I said it with a smile and in a way where it didn't seem like such a big deal which I think helped to put them at ease. There were a few questions about whether I fall and convulse like they see in the movies (no because I have complex partials) but that was about it. They haven't brought it up since then, although they do offer to drive more often than before.
I think it's helped that I mention it in passing or with a smile. If I don't make it a big deal or look sad, other people may not convey it to be a bad thing.
When I do get pity or fear is when I have a seizure on an unsuspecting individual, like my boss. It scared her so much that afterwards she treated me with kid gloves.
For some reason though, I'm still scared to tell people because I don't want their pity, attention or fear.
Re: NO! I DON'T WANT PITTY..... I WANT UNDERSTANDING & SURPPORT
Submitted by s10sleeper on Tue, 2011-10-04 - 22:20
In a way, I can understand, however I have never really gotten pity about it except for a very small number of people. I think that understanding and support seems to be what we all wish for. The only people that seem to be supportive of me are the epilepsy center staff, my psychiatrist and my psychotherapist. Most people I know, if they hear that I have had a seizure, the most I get is an "oh bummer" kind of response. My siblings never contact me unless they want something and didn't even call before or after my recent surgery. My mother took me to the surgery and I found out that while I was in for surgery that all she did was complained to my brother about my anxiety and panic attacks before the surgery. None of the family has even read up on anything about epilepsy. The other issue I have found with many people is when they ask me how something pertaining to my seizures has gone they seem to try to top it saying that they are in more pain, as if I am trying to compete. My family is the worst about that, basically dysfunctional. I have just learned to avoid the subject altogether so that it doesn't keep happening.