I just need to vent

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Sorry to hear that Belinda.

Luckily, my family have been supportive. My boyfriend however, does have his moments of being not so supportive. A couple of months ago I had a petit mal while in the car with him, when it started obviously I worry as it could generalise. The first thing he shouted was "you need to take meds", this wasn't what I needed to hear at this stage. Then he kept telling me to calm down and stop tensing, even though I couldn't bloody help it. It surprised me as he had another boyfriend with E many years ago, so I thought he would at least know that I can't control what I do when it happens. I dunno whether he thought because it was only a petit mal, that it wasn't that bad, but the fear of it generalising is bad enough.
 
I feel very much the same and my family is the same, my mom and my brother... Not at all happy u feel this way, but do have to say I feel better to know its not just me...these seizures are hard to handle, so according to my brother I have my pitty party and I'm about to have my second surgery and all these judge mental things him and my mom have just told me are very overwhelming... They just don't understand AT ALL!!!! Idiotic A$$holes..😖😁
 
Belinda, hope u see what I wrot . This is my first time on here, not quite sure how to do this
 
acshuman said:
Belind5000,
You are so correct about that!
I know that my in-state Foundation(EFMN)has one day a year when we go to the state capital to speak with our representatives and senators.
The first year that I went, I set up times to meet both men individually. As I was talking too each of them, I asked him who he asked if he needed information about a subject. I asked each of them who they would ask about E. I got the same answer from each one of them! They both said they would ask a specialist, I looked at each one individually and told each one "No, you should be asking the people who have to deal with their problem(E) daily'! Each of them looks at the ceiling, and you could tell that they were thinking. Then each one looked at me and said 'you know, you are right, can I ask to to testify before the House or Senate if I feel you would have a good way of explaining your problems'.
I feel that this opened the guys eyes, and they have passed this on to others that they work with.
I am still in touch with these men. They attend any workshop of Seizure Smart presentation EFMN conducts in their areas!
It is common for people to think this way, but in reality, we(the people w/E) are really the ones who truly know what is is like to live with E in our lives!

ACsHuman:twocents:
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Well need prayers if Trump gets all you get is his impersonation of someone having sz I believe he already done but badly
 
Howll said:
Sorry to hear that Belinda.

Luckily, my family have been supportive. My boyfriend however, does have his moments of being not so supportive. A couple of months ago I had a petit mal while in the car with him, when it started obviously I worry as it could generalise. The first thing he shouted was "you need to take meds", this wasn't what I needed to hear at this stage. Then he kept telling me to calm down and stop tensing, even though I couldn't bloody help it. It surprised me as he had another boyfriend with E many years ago, so I thought he would at least know that I can't control what I do when it happens. I dunno whether he thought because it was only a petit mal, that it wasn't that bad, but the fear of it generalising is bad enough.
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I don't wanna interfere in a relationship especially since I've never had one but it's not like your gaining weight or something. If someone in your life doesn't agree with your e then get rid of them.
 
People Misunderstanding E!!!

Howll,
I know from experience that even people who have experience with E, because they previously knew someone w/E, may NOT be accepting of a person who has E. I believe that they have these negative feelings more out of FEAR than actual dislike of the person!
It is a normal feeling for a person to be FEARFUL of something that they DON'T understand! It is this type of FEAR that is the most important barrier that WE as people w/E have to tear down! As long as people have this FEAR of our E everybody who has E is going to be misunderstood or mistreated.
Your BF's reaction sounds like a person who was saying anything that he thought may help, but actually was so SCARED he was saying hurtful things. He did this because he DID NOT have the necessary knowledge he would have needed to realize that you COULDN'T control what you were doing while having a seizure!
 
When I joined a gang everyone loved me and went out of their way to make me comfortable. It's not a great way to gain acceptance but I was desperate for love and understanding. My friends all knew I didn't like to talk about it so they only brought it up if I did. And they were great help when I had a seizure in public. I'm getting old now so life isn't the same but I'm lucky I'm good looking enough that e is something a woman could live with. Not that I've had a long relationship. But who knows. Life is weird add e and its weirder
 
Oh great, we got another one who thinks she/he ... it. Knows the way of the ogre.
 
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