Has anyone who has Epilepsy EVER felt like they were LOCKEDOUT of any type of event & or event's through thier whole lifetime that they feel like THEY'RE ALL ALONE & NOBODY WANTS ANYTHING TO DO WITH THEM? For I feel thatway AT TIMES & it scares me & my fiancee as well. I moved from ILLINOIS to KENTUCKY back in Dec 19Th 2007 & now just a week ago I foundout through my mom that a neighbor I liked passed away. I feel bad that I wasn't there to say goodbye cause I thought of him as a grandfather figure sadthing is his wife is still alive & I left W/O saying goodbye to them both. I just find it hard to make friends in this new invirement because I can't drive due to my siezures & even though i'm on my meds I nolonger can feel them hitting me due to NOV 2000 I had 4 consecitive grandmals back to back . Do you think i'm just holding myself prisoneer? Thanks for reading my post DAVE from Kentucky . P.S. From what my mom wrote to me HER doctor told her NOT to let me ever comeback even for a visit SUCKS TO BE ME.
I'm just curious & serious resposes only
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Friendless and Isolation is quite common
with people with Epilepsy mainly due to
the ignorance of others.
=======================
Then there is also "fears of rejection" from
those who have Epilepsy when attempting
to create or develop friendship, which causes
uneasiness, nervousness, retreating, etc;
mainly due to the 'past experiences'.
As well as the feelings of "restrictions" knowing
that the "normal people can ...." and they are
unable to do so; and focus so much concerning
their own "restricted" lifestyle; is also a major
hindrance as well.
=======================
Then people who 'knows' so and so has "epilepsy"
they back off and do not desire to 'associate'
or 'be found' with such person or people; for
their 'social status' and/or 'ego' is far more
important to them.
As well as people who, out of total pure
ignorance who were raised up under the
influence of the whole wrong ideas of what
"epilepsy" is ... so they avoid it in all angles
as much as possible.
=======================
And I could go on and on and on with all kinds
of reasons of how's and why's from both sides
of the fence.
with people with Epilepsy mainly due to
the ignorance of others.
=======================
Then there is also "fears of rejection" from
those who have Epilepsy when attempting
to create or develop friendship, which causes
uneasiness, nervousness, retreating, etc;
mainly due to the 'past experiences'.
As well as the feelings of "restrictions" knowing
that the "normal people can ...." and they are
unable to do so; and focus so much concerning
their own "restricted" lifestyle; is also a major
hindrance as well.
=======================
Then people who 'knows' so and so has "epilepsy"
they back off and do not desire to 'associate'
or 'be found' with such person or people; for
their 'social status' and/or 'ego' is far more
important to them.
As well as people who, out of total pure
ignorance who were raised up under the
influence of the whole wrong ideas of what
"epilepsy" is ... so they avoid it in all angles
as much as possible.
=======================
And I could go on and on and on with all kinds
of reasons of how's and why's from both sides
of the fence.
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Speaking of Ignorance........
I would like to post a poem I wrote on this very subject:
I wrote this out of the very type of frustration you're talking about, Dave. People seem to think it couldn't happen to them and it scares them when they actually witness a grand mal seizure. I was 22 and perfectly healthy when I had my 1st grand mal seizure and have been fighting epilepsy for nearly 30 years.
Cindy
I would like to post a poem I wrote on this very subject:
The Bliss of Ignorance
If ignorance is Bliss,
Why do so many choose to miss,
Ignore or disregard learning,
When many in the world are yearning?
Yearning for a cure to our affliction,
Not a drug or alcohol addiction,
A condition you can't always see,
When you do, we may "look" crazy.
We may stare and chew, or fall and quake,
It's a seizure and our life could be at stake.
Once it was called the "devil's disease",
Now it is named epilepsy.
So if you see a seizure and don't know what to do,
Perhaps a friend or a loved one has a clue,
Only when the right knowledge is in place,
Then we know we will be safe.
Please don't ignore us today,
When today may never be a yesterday.
No one knows it all,
Ignorance is Bliss, so they say.
If ignorance is Bliss,
Why do so many choose to miss,
Ignore or disregard learning,
When many in the world are yearning?
Yearning for a cure to our affliction,
Not a drug or alcohol addiction,
A condition you can't always see,
When you do, we may "look" crazy.
We may stare and chew, or fall and quake,
It's a seizure and our life could be at stake.
Once it was called the "devil's disease",
Now it is named epilepsy.
So if you see a seizure and don't know what to do,
Perhaps a friend or a loved one has a clue,
Only when the right knowledge is in place,
Then we know we will be safe.
Please don't ignore us today,
When today may never be a yesterday.
No one knows it all,
Ignorance is Bliss, so they say.
I wrote this out of the very type of frustration you're talking about, Dave. People seem to think it couldn't happen to them and it scares them when they actually witness a grand mal seizure. I was 22 and perfectly healthy when I had my 1st grand mal seizure and have been fighting epilepsy for nearly 30 years.
Cindy
Crazy Monkey
Playing With Angels
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:agree: with Brain, I have experienced first hand being a social reject/outcast.
I cannot stand being judged and I do not like people to feel uncomfortable around me, just because they do not understand about epilepsy, also I do not like people to suddenly become all sympathetic towards me as it is not necessary.
I have lost friends because of my E, so now I am careful who I tell. When I do tell people, I make sure that I spend time with them so that they are educated and can see no reason to back off.
I often feel isolated due to lack of independence, we do not have the luxury of jumping into our car for the simplest of things, shopping, visiting family etc. But I try to keep myself out and about as I get so bored at home. I am very lucky in that I have my Uncle on call if I ever want to go anywhere, so I am not overly restricted on my expeditions, but it is just frustrating not being able to make the journey independently.
You not alone in how you feel!!!!!!
I cannot stand being judged and I do not like people to feel uncomfortable around me, just because they do not understand about epilepsy, also I do not like people to suddenly become all sympathetic towards me as it is not necessary.
I have lost friends because of my E, so now I am careful who I tell. When I do tell people, I make sure that I spend time with them so that they are educated and can see no reason to back off.
I often feel isolated due to lack of independence, we do not have the luxury of jumping into our car for the simplest of things, shopping, visiting family etc. But I try to keep myself out and about as I get so bored at home. I am very lucky in that I have my Uncle on call if I ever want to go anywhere, so I am not overly restricted on my expeditions, but it is just frustrating not being able to make the journey independently.
You not alone in how you feel!!!!!!
BuckeyeFan
Grandpa
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Your feelings are shared by many here
Each of us has probably went through the feelings you describe, though I am sure it is much worse for some due to their situation. The isolation of not driving and being away from family is hard on anyone, let alone someone struggling with medical problems.
These feelings are a two way street. So many 'healthy' poeple are ignorant of E and do say hurtful things. Others do the next worse and simply act as if we are not there. I have been lucky in life that this has not happened to me very often.
The other side of the street is the one we create ourselves. It is easy for us to relate a very innocent remark and twist it into a negative when we are already feeling down. These harsh feelings feed on themselves. We can begin to percieve others actions as worse than they really are meant to be.
This is not to downplay our perceptions. One of my old sayings is perception is reality in many ways. If we are frightened of something that does not exist, we are still frightened.
Keep your thoughts positive Dave. Just think, spring will reach you before me. Before you know it, that beautiful new home state of yours will be covered with green again.
Each of us has probably went through the feelings you describe, though I am sure it is much worse for some due to their situation. The isolation of not driving and being away from family is hard on anyone, let alone someone struggling with medical problems.
These feelings are a two way street. So many 'healthy' poeple are ignorant of E and do say hurtful things. Others do the next worse and simply act as if we are not there. I have been lucky in life that this has not happened to me very often.
The other side of the street is the one we create ourselves. It is easy for us to relate a very innocent remark and twist it into a negative when we are already feeling down. These harsh feelings feed on themselves. We can begin to percieve others actions as worse than they really are meant to be.
This is not to downplay our perceptions. One of my old sayings is perception is reality in many ways. If we are frightened of something that does not exist, we are still frightened.
Keep your thoughts positive Dave. Just think, spring will reach you before me. Before you know it, that beautiful new home state of yours will be covered with green again.
Just curious
is it just me or do others that have epilepsy feel like they're being alienated from others that don't have epilepsy just because that person thinks if they're near a person with epilepsy they might catch it like aids?i'm sorry if i sound foolish or stupid but i get those vibes from people alot & it ticks me off!!!!!!!!!!
is it just me or do others that have epilepsy feel like they're being alienated from others that don't have epilepsy just because that person thinks if they're near a person with epilepsy they might catch it like aids?i'm sorry if i sound foolish or stupid but i get those vibes from people alot & it ticks me off!!!!!!!!!!
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epileric
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I've always felt the outsider
But I also feel that I'm more independent, & in some ways more confident in myself because my decisions & actions are not dependent on what the group says or does.
I have also had "good friends" suddenly have no time for me when they found out I had E. even though they'd seen numerous seizures & not known the difference. I don't let it bother me since I don't like to be associated with people that are so closed minded.
But I also feel that I'm more independent, & in some ways more confident in myself because my decisions & actions are not dependent on what the group says or does.
I have also had "good friends" suddenly have no time for me when they found out I had E. even though they'd seen numerous seizures & not known the difference. I don't let it bother me since I don't like to be associated with people that are so closed minded.
Crazy Monkey
Playing With Angels
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I read it as people are uneducated and do not feel comfortable being in our presence. People might see us as contagious or worry to be out with us, due to having a seizure in public, but this is once again ignorance towards our condition. How much attention would people pay to an asthma attack happening in public compared to having a seizure???
I try very hard not to allow myself to feel alienated, but it can be difficult, I just stay positive and focus on something of interest to me, I find it helps to have something to look forward too.
I have found sometimes people need some time to absorb their friends medical conditions. The one thing I always worry about when telling people is that my friends would wonder why I didn't tell them sooner and it might look like I didn't trust them enough.
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