Relationship advice with E

[sassi]

So I'm talking to this guy and it seems to be working out well. We're going to go out and everything and I feel like we're hitting it off. What I really want to do is ask when is it the appropriate time to tell him, or anyone I'm dating really, about my seizures? I remember from my therapist about establishing boundaries and I also feel like this is one of those things that you tell the person face to face. You don't drop the bomb via text or through a phone call. That wouldn't do for a conversation like this, I feel like you would need the face to face interaction and to be able to navigate the conversation better.

My question is: do you tell them on the first date? The second? Third? How do you do about it? And how do you artfully weave it into the conversation in the first place? I feel like it's necessary, of course, but I also don't quite know how to say it. It's part of the reason why I'm not driving (the other half legitimately, my car is really screwed up. Something is wrong with it so I'm using that as my first excuse just so I'm not coming out with it up front via text).

Caveat to this guy, I met him online and didn't really think that anything was coming of my talking to guys online but this is coming to something more fruitful than not. So, opinions, advice, etc etc, is desperately needed! Thanks so much! I feel so lost in this arena.

 

[valeriedl]

I met my now husband at a concert on a Friday. He called me on Saturday and we went on our first date on Sunday. He knew I had epilepsy before he picked me up on Sunday.

I'm not positive but I think I told him at the concert on Friday because he asked me where I worked. I told him that I didn't work because I had epilepsy.

When he came to pick me up I was living at my parents and they explained to him what my seizures were like and what to do if I had one because I was having them quite often at the time. We didn't want him to freak out if I were to have one on that first date.

You could bring it up by saying that you don't drive (or work if you don't) and it's because you have epilepsy. I'd tell him face to face. You can explain things better and if he has any questions you would be able to talk about it much easier. I don't know how bad and often your seizures are but I'd tell him as soon as you can. That way if you do have a seizure in front of him he knows what's going on and what to do.

I hate to say this too but another reason I'd tell him as soon as you can is to make sure he wants to have a relationship with you knowing you have epilepsy. He's going to have to deal with the seizures, side effect of medicine, you not being able to drive and many other things. If he doesn't want to deal with this then it's not worth wasting your time dating him.

The first seizure I had in front of my husband, I think we had only been dating for about a month, scared the crap out of him and I ended up in the ER. You can tell someone what they are like but it's not the same as actually seeing you have one. He knew what he was going to be dealing with if he stayed with me. Nine years, and I can't even begin to count how many seizures, later he's still here.

 

[sassi]

Thanks so much for this advice! It really helped. I talked with a few other friends, who don't have seizures, but who know I do, as well. The topic came up when he started to ask about late-night movies and how I can't do late-night movies and I told him I can't do late nights because of my health and school and, because I'm too bluntly honest for my own good, told him over the phone. It's better than text but not how I wanted to do things, not by a long shot.

I told him that I had partials, not usually tonics, and that I'm usually confused and disoriented and don't remember the day afterward. He took it really well and I was impressed.

I, for some reason, felt a little undateable due to E. Maybe it's a combination of lack of independence and not knowing when I'm going to have my next seizure or how bad it's going to be. But you're right, if I were to have one on the first date, I don't want to freak him out. The last one on Saturday would've weirded anyone out as I was just unable to talk looking drunk/stoned or something and touching things in a store.

I also want him to know so that, if I do end up needing to go to the ER again, he knows. Plus, he knows that not every little seizure will necessitate a trip to the ER either. My seizures come and go and tend to be every other day or every third day, it depends on sleep and other circumstances. They're usually partials and I had a really bad on that had me in the ER (combined with lots of 4, 5, and 6 hour nights, coffee, and alcohol) on the 23rd of August, just a nasty complex partial that had me confused for what felt like months but was only 2 hours (I still have trouble grasping that it was only two hours, it feels like longer.. I lost so much time). Like last night I took a Mucinex D and didn't sleep for anything so today I'm going to be on high alert for one. I took a Melatonin but that didn't do me much good either. Sleep, I apparently don't know how when taking cold medicine.

But thanks again for the wonderful advice! I'll keep you updated with how things are going! So far, so good! I'm just playing it by ear, seeing how it goes.

 

[Zara-Newman]

I think it would be better to tell him sooner rather than later, you wouldn't want to get too deep into the relationship only to find that he is going to run a mile.

Some people are fine with it, others aren't. It is better to know, he will find out eventually. X

 

[sassi]

I think it would be better to tell him sooner rather than later, you wouldn't want to get too deep into the relationship only to find that he is going to run a mile.

Some people are fine with it, others aren't. It is better to know, he will find out eventually. X

I ended up telling him already so we'll see how he takes it once I have one. Knowing someone has seizures is totally different than actually experiencing one when it happens so I don't know. He mentioned some of the people he's worked with have seizures or have had seizures but he didn't know how to react (which is common). I told him how I've told everyone in my family to react: stay calm and just keep an eye on me and make sure I don't hurt myself. If it looks like I'm going status get me to the ER. Otherwise I'll be fine after a little while but I probably won't remember the day or the events preceding the episode very well.

He took it well so we'll see from here. If it doesn't work out it doesn't work out. No skin off my nose. I have E, E doesn't have me but I still have it and it's very real. And after nights like last night the possibilities of having a seizure go up.

 

[Chris515]

Your post sounded similar to what I went through many years ago. I met my now wife online as well, and wasn't sure when to tell her about my E. It did take me until the third date or so, and I figured if she wasn't going to be accepting or understanding of my E then she's not someone I'd want to be with. But she reacted to it really well and said she would take care of me if I had a seizure.

Many years later and many seizures later she continues to take great care of me!

I hope things work out for you sassi!

 

[C0urt]

do a search there are a stack of thread about relationships

 

[valeriedl]

They're usually partials and I had a really bad on that had me in the ER (combined with lots of 4, 5, and 6 hour nights, coffee, and alcohol) on the 23rd of August, just a nasty complex partial that had me confused for what felt like months but was only 2 hours (I still have trouble grasping that it was only two hours, it feels like longer.. I lost so much time). Like last night I took a Mucinex D and didn't sleep for anything so today I'm going to be on high alert for one. I took a Melatonin but that didn't do me much good either. Sleep, I apparently don't know how when taking cold medicine.

Too much caffeine and lack of sleep are big seizure triggers for me. Anytime I drink a lot of caffeine I'm bound to have one. Also goes with not getting enough sleep. I really don't drink, but alcohol is another trigger. Try to cut back on the caffeine, alcohol and try to get as much sleep as you can. This will probably cut down on the seizures.

 

[sassi]

Too much caffeine and lack of sleep are big seizure triggers for me. Anytime I drink a lot of caffeine I'm bound to have one. Also goes with not getting enough sleep. I really don't drink, but alcohol is another trigger. Try to cut back on the caffeine, alcohol and try to get as much sleep as you can. This will probably cut down on the seizures.

I hadn't had any for a while (around May 2nd) so I had gotten complacent and ignored the warning of me waking up from a nap confused and disoriented so I thought it was okay. I'm still new to having seizures so it's taking my rebellious side a bit getting used to it and trying to wrap my mind around how scary it is.

Since that day I've had no caffeine and I don't know what's in the Mucinex D but I'm not taking it again, I'll just look for alternatives to cold medication. Sleep is something I get plenty of since I take naps in the car on the way to school and back now, lol. And I'm about to hit the hay now. It's definitely my bed time!

 

[C0urt]

if he can't deal, you didn't want him

 

[valeriedl]

if he can't deal, you didn't want him

This is the absolute truth!!!

After my first seizure I had to move back home with my parents, which made the guy that I was dating at the time live about an hour away from each other.

We talked on the phone didn't get together that often (he really never put too much effort into it). The relationship just sort of faded away. Phone calls became less often and we only got together every other week or so. I think we stayed together maybe 2 months after I moved back home.

It really didn't break my heart however because I didn't remember him at all after my first seizure. It was a very bad one and I forgot almost everything that happened 10 years before it. I had no clue who he was and had to ask someone who the guy was that kept coming to the hospital telling me he loved me and kiss me.

I never had the guts to tell him that I didn't know who he was or remember anything that happened during our relationship, so I was never upset about the breakup. Technically I don't know if we officially broke up though, he just stopped calling?

He mentioned some of the people he's worked with have seizures or have had seizures but he didn't know how to react (which is common). I told him how I've told everyone in my family to react: stay calm and just keep an eye on me and make sure I don't hurt myself. If it looks like I'm going status get me to the ER. Otherwise I'll be fine after a little while but I probably won't remember the day or the events preceding the episode very well.

This is a good thing too. Since he already knows a little about it that might help.

Right from the start my husband started to learn as much as he could. About a year after we started dating he started coming to my neuro appts with me (calling off work to do it). I almost want to say he might know more about epilepsy than I do sometimes!

Good luck and I hope things work out!

 

[sassi]

if he can't deal, you didn't want him

Those are my thoughts on the subject. Plus the added responsibility of a relationship on top of school can be stressful and I'll have to explain that to him at a later date when things get more involved because that can end up becoming a trigger.

This is a good thing too. Since he already knows a little about it that might help.

Right from the start my husband started to learn as much as he could. About a year after we started dating he started coming to my neuro appts with me (calling off work to do it). I almost want to say he might know more about epilepsy than I do sometimes!

Good luck and I hope things work out!

So far so good! I'm just now inviting my mom to my neurologists appointments so it might be a little bit before I'm inviting anyone else but I do hope that the fact that I've mentioned I have it means that he might be doing his research.

If not then I'll make decisions from there but otherwise I'm happy with either way it could go! He already knows I go to bed early so that won't ever change.

Relationships are just a challenge, no way around it, and having to live with your parents while fiddling with your medication and school on top of it; it's a nice little tightrope that I have to walk. And I'm working still, as my seizures haven't had that much of an impact on my job -- yet -- to keep me out of it. Once I start having issues there I'll have to reevaluate.

valeriedl, that sounds like me so far as forgetfulness. The more activity I have during a particular day the more I forget of that day (which is great for school /sarcasm. Another reason why I write detailed notes in class). Sometimes I end up forgetting even stuff that happens during the week, it's just annoying. I'm grateful for the days when I don't have activity. I've probably told him things twice now just because of it.

 

[valeriedl]

valeriedl, that sounds like me so far as forgetfulness. The more activity I have during a particular day the more I forget of that day (which is great for school /sarcasm. Another reason why I write detailed notes in class). Sometimes I end up forgetting even stuff that happens during the week, it's just annoying. I'm grateful for the days when I don't have activity. I've probably told him things twice now just because of it.

I'm pretty much the same way.

You can't imagine how many times I tell people the same thing over and over again. Half the time I'll start telling a story and mid sentence the person will finish the story for me!

 

[LMReggcellent]

Come to think of it, everybody I've ever dated knew I had epilepsy before our first date. It always came up quickly because I explained why I didn't drive. And as a communications/journalism major in college most of my presentations were about epilepsy awareness, so all of my classmates knew about it. Or at least the ones that attended and paid attention in class.

 

[kyrissa]

valeriedl, that sounds just like me for memory. My boyfriend often finishes my sentences. It drives him nuts that I can't remember things like what movies I've seen. We'll watch a movie and the next week I can't remember things in it.

He was quite upset today because I had 3 complex partial seizures. I usually have 1 or 2 once a month. He's still learning the best way to support me, but I realize it puts stress on him too.

 

[Meetz1064]

In my

case, my ex husband was my boss. I had had to fill out a job application and one of the things that on it was a question about medical conditions that might cause a problem within the workplace.

Well, working in a collegiate kitchen including working with slicers, and other really sharp objects....so I asked him if he thought my E was something I should list on there.

*sigh*

 

[C0urt]

Flying knives ahhhhh!