In the past ,I've always had trouble relating my epilepsy to people . New friends , new partners ect ect . So much so that I used to have a tendancy to push people away that seemed to care ( was far easier than getting rejected or have them look at you like some sort of zoo animal ) however today I sucked it up with a group of people I've been spending time with and just opened up about my TLE .which got me thinking if I'm alone in finding it difficult in finding new friendships and more so maintaining them ? How do you all go about it if so ? Does anybody else put off telling new social circles ?
Feeling proud and a little smug
- Thread starter NaomiD
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 2,241
- Reaction score
- 0
- Points
- 0
Naomi
It actually depends on how I feel around the person and since I'm not controllable I tell people I know I'll be around a lot; and if they can't handle it that's there problem.My friends and if they can't handle you having having seizures and want nothing to do with you when you tell them they weren't a real friend to begin with.
I've only had one person who was afraid to be with me because of my seizures.
It actually depends on how I feel around the person and since I'm not controllable I tell people I know I'll be around a lot; and if they can't handle it that's there problem.My friends and if they can't handle you having having seizures and want nothing to do with you when you tell them they weren't a real friend to begin with.
I've only had one person who was afraid to be with me because of my seizures.
Should You Tell or Not?
NaomiD,
I can only tell you that I have found out, over the 5 decades that I have had E, that it works a lot better to tell people about my E ASAP! I tell any new person that I meet that have E. I have seen that when I do this the people are many times caught off-guard by my frankness. They also may be unable to respond in a negative way about my E. This lets me talk to them with no problems. They can think about what I told them after we have talked. If they are the type of person who doesn't want to be around me after they think about what I have said, I know that they are not the kind of people I want as acquaintances or friends.
I have also felt that some people will give a person who is upfront about any problems that they may have more respect! It is a good feeling to hear someone say to me 'I don't know how you can talk about your E, let alone live with it'. Hearing something like that tells me that the person feels I am a strong person.
When a person holds back telling about their E, it could lead to them thinking that they can put off saying or doing things that may be very important, and need to be spoken about or dealt with now and NOT later. :twocents:
ACsHuman
NaomiD,
I can only tell you that I have found out, over the 5 decades that I have had E, that it works a lot better to tell people about my E ASAP! I tell any new person that I meet that have E. I have seen that when I do this the people are many times caught off-guard by my frankness. They also may be unable to respond in a negative way about my E. This lets me talk to them with no problems. They can think about what I told them after we have talked. If they are the type of person who doesn't want to be around me after they think about what I have said, I know that they are not the kind of people I want as acquaintances or friends.
I have also felt that some people will give a person who is upfront about any problems that they may have more respect! It is a good feeling to hear someone say to me 'I don't know how you can talk about your E, let alone live with it'. Hearing something like that tells me that the person feels I am a strong person.
When a person holds back telling about their E, it could lead to them thinking that they can put off saying or doing things that may be very important, and need to be spoken about or dealt with now and NOT later. :twocents:
ACsHuman
I have no problem telling people that I have epilepsy. There is nothing to be ashamed about. I also like to educate people about epilepsy. My friends have never had a problem with it and I always have told men as soon as we started dating. I have now been in a relationship with the same person for years. He is very supportive and understanding.
I went through undergrad and grad school as a single-mother with epilepsy and graduated with a 3.5 GPA both times and I'm proud of it.
I went through undergrad and grad school as a single-mother with epilepsy and graduated with a 3.5 GPA both times and I'm proud of it.
Last edited:
Hi Naomi,
Everyone is different when it comes to tell the family or friends about their epilepsy but I have found that being open with others has made it easier for myself and my friends. that way they will know I may have a seizure and there's nothing to be afraid of. I also tell myself if that person or persons can't accept me because I have epilepsy then they aren't a true friend. I also like to point out all the famous people in the world who have or had epilepsy and how they didn't let the epilepsy stop them. Wishing you well and May God Bless You!
Sue
Everyone is different when it comes to tell the family or friends about their epilepsy but I have found that being open with others has made it easier for myself and my friends. that way they will know I may have a seizure and there's nothing to be afraid of. I also tell myself if that person or persons can't accept me because I have epilepsy then they aren't a true friend. I also like to point out all the famous people in the world who have or had epilepsy and how they didn't let the epilepsy stop them. Wishing you well and May God Bless You!
Sue
- Messages
- 5,552
- Reaction score
- 32
- Points
- 213
Hi Naomi and Welcome to CWE,
I've had E for 35+ years and am not ashamed of it. IMO, it is a brain disorder, just the same as asthma is a lung disorder. My son had a bad case of asthma while growing up and that is what I would tell my children, just another medical problem to deal with. And my kids have witnessed many seizures over the years, so they now know what to do when they witness some one else going thru it.
I've had E for 35+ years and am not ashamed of it. IMO, it is a brain disorder, just the same as asthma is a lung disorder. My son had a bad case of asthma while growing up and that is what I would tell my children, just another medical problem to deal with. And my kids have witnessed many seizures over the years, so they now know what to do when they witness some one else going thru it.
JJR1956
New
- Messages
- 154
- Reaction score
- 0
- Points
- 0
Hi NaomiD,
My opinion is, it depends on the person/people you're trying to be friends with. I had some X-friends that thought I had a funny disorder, and made fun of it. That's why they are now X-friends. But then again, I had friends who understood where I was at and that I wasn't a person to make jokes about.
It's a touchy situation.
All My Best, and Welcome!
Joey
My opinion is, it depends on the person/people you're trying to be friends with. I had some X-friends that thought I had a funny disorder, and made fun of it. That's why they are now X-friends. But then again, I had friends who understood where I was at and that I wasn't a person to make jokes about.
It's a touchy situation.
All My Best, and Welcome!
Joey
- Messages
- 17,355
- Reaction score
- 756
- Points
- 263
Most of my friends have known me long enough that they know about my seizure history too. Some newer acquaintances don't know -- though if it came up in conversation I wouldn't hesitate to talk about it. I'm lucky enough to have seizure control right now, so it's less of a factor when meeting new folks. I've lived in my building for over 12 years, and none of my neighbors know.
To Tell Ore Not?
Naomi,
I can say that I have known people that had a neighbor who had E and he had never told any of they that he had E. One day he was cutting his grass and had a seizure while doing it. A neighbor saw him on the ground and didn't know what to do. If he had told the neighbors about his E and told them that they didn't need to call 911 it probably wouldn't have been as hard on his neighbors.
It is something that each person has to make their own decision about.
ACsHuman
Naomi,
I can say that I have known people that had a neighbor who had E and he had never told any of they that he had E. One day he was cutting his grass and had a seizure while doing it. A neighbor saw him on the ground and didn't know what to do. If he had told the neighbors about his E and told them that they didn't need to call 911 it probably wouldn't have been as hard on his neighbors.
It is something that each person has to make their own decision about.
ACsHuman
Zara-Newman
New
- Messages
- 309
- Reaction score
- 0
- Points
- 0
It's interesting, I was diagnosed when I was 15/16, but was having problems with loss of conscious for a long time before that.
I am just about to turn 23 and have only recently "come out" to the people around me as epileptic.
I literally used to leave friends in pubs and restaurants, to have seizures in bathrooms - they thought I had an eating disorder for a while.
I told a couple of close friends, that I really couldn't hide it from, but I posted a status on my Facebook about it a few weeks ago, because I was going to be in the local news for my epilepsy (not in a good way)
I completely understand about pushing people away, even though people know now, I still don't talk about it with them and don't let anyone see me in a bad position.
Sent from my SM-G920F using Tapatalk
I am just about to turn 23 and have only recently "come out" to the people around me as epileptic.
I literally used to leave friends in pubs and restaurants, to have seizures in bathrooms - they thought I had an eating disorder for a while.
I told a couple of close friends, that I really couldn't hide it from, but I posted a status on my Facebook about it a few weeks ago, because I was going to be in the local news for my epilepsy (not in a good way)
I completely understand about pushing people away, even though people know now, I still don't talk about it with them and don't let anyone see me in a bad position.
Sent from my SM-G920F using Tapatalk
- Messages
- 2,241
- Reaction score
- 0
- Points
- 0
Naomi,
What would you do if you ended up not being able to be controlled?
I ask because I'm refractory and I have all kinds of sz's not just one kind; I don't have auras and I have to tell ppl about my E because I never know when I might have a seizure I'm not controllable.
What would you do if you ended up not being able to be controlled?
I ask because I'm refractory and I have all kinds of sz's not just one kind; I don't have auras and I have to tell ppl about my E because I never know when I might have a seizure I'm not controllable.
Topcat,
I agree and it's not just with tonic-clonics. I'll stop talking mid-sentence if I go into a complex partial b/c I can't speak during a complex partial. Strangers would be saying what's happening? What's wrong? I couldn't answer until after the seizure was over and I was able to speak. I often can't even speak right away after the seizure. But, if people know what's happening and are educated then it's not a big deal and they're not freaking out. One time when I had a complex partial in a store a stranger started freaking out and was yelling for help. She thought I looked like I was going to collapse and grabbed me. People's reactions can actually make the seizure worse for me b/c intense fear is my aura and one of the main symptoms of my complex partial. It's best if people are calm and I'm just left alone when I have a seizure. I have told family and friends not to talk to me or touch me when I'm having a seizure. People would think if they put their arm around me or their hand on my shoulder they were comforting me. But, actually I can't stand to be touched during a seizure. I'm not sure of the reason for that, though.
I agree and it's not just with tonic-clonics. I'll stop talking mid-sentence if I go into a complex partial b/c I can't speak during a complex partial. Strangers would be saying what's happening? What's wrong? I couldn't answer until after the seizure was over and I was able to speak. I often can't even speak right away after the seizure. But, if people know what's happening and are educated then it's not a big deal and they're not freaking out. One time when I had a complex partial in a store a stranger started freaking out and was yelling for help. She thought I looked like I was going to collapse and grabbed me. People's reactions can actually make the seizure worse for me b/c intense fear is my aura and one of the main symptoms of my complex partial. It's best if people are calm and I'm just left alone when I have a seizure. I have told family and friends not to talk to me or touch me when I'm having a seizure. People would think if they put their arm around me or their hand on my shoulder they were comforting me. But, actually I can't stand to be touched during a seizure. I'm not sure of the reason for that, though.
Last edited:
Have any of you ever had the experience of someone being afraid of you holding their baby b/c of your seizures? I just remembered something that happened 26 years ago. A friend of mine was nervous about me holding her baby b/c of my seizures. She wanted me to sit down while holding the baby like I was a child. A couple of years later, I became a mother and I never dropped my baby. If I would feel an aura while standing up and holding my daughter I simply sat down. I thought about this b/c of something that happened to me the other day. I asked a neighbor/friend if I could use her swimming pool for a daily workout. She said no and the reason she gave is that I'm a liability b/c of my epilepsy. I could not believe she said this or even thought this. I am a strong swimmer. I have been swimming since I was 2 years old. I have had many seizures while swimming. I get auras and react. I simply swim to the edge or steps if I feel a seizure coming on. I've never had a problem. Furthermore, I had surgery 11 months ago and I only have auras now. I just had 1 complex partial since the surgery. My neighbor/friend made me angry and I want to set her straight and convince her that she has nothing to worry about. Anyways, if something were to happen to me my family would not hold her liable and she should know that. It just really bothers me and upsets me that she would even think of me this way.
Last edited:
My mother never accepted it ,was a no talking subject.friend of mine heard me mention it and look was horror I quickly recanted said suffered with black outs but the top idiot was husband he saw me as cash cow my e would bring me reword him disability allowance and he proberly not notice sz if he was standing on me never my luck he bugger off
- Messages
- 2,241
- Reaction score
- 0
- Points
- 0
It got to the point with my mother where she would say you might have a seizure, and I just started saying so it didn't matter with me. I wasn't allowed graduate with my class in High school because I might have embaressed her.
When I ended up in the EFA paper it just made her mad I told the truth and I sent her a copy of the paper.
When I ended up in the EFA paper it just made her mad I told the truth and I sent her a copy of the paper.