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New boyfriend doesn't seem to want to deal

Sun, 04/10/2005 - 16:37

Okay, backstory -

I'm 35 (36 in a few months).  Was diagnosed with epilepsy at age 10 after having my 1st seizure.  Went on phenobarb.  At 20, had my 2nd seizure.  I was very lucky. I knew that.

At 22, married an incredibly wonderful man, who was also an intensive care nurse and my best friend.  He told me that I occasionally had seizures in my sleep (after reading online, I'm guessing myoclonic - did I spell that right?), but I didn't want to hear it.  But he could deal with it.  He was a nurse, after all.  He dealt with worse things every night at work.

8 years ago, he died.  It took me a very, very long time to even think about finding someone new to share my life.  In November, I met someone.  We started dating in December.  (oh - I had two seizures in the three years after my husband died, the 4th one causing some pretty bad memory problems and problems finding words, etc)

In September, I had started having severe migraines every month right before "that time" of the month.  The last few months they have gotten worse and worse, and my dr finally sent me to a neurologist (hadn't been to one since I moved to this state 5 yrs ago).  After talking to him for just a short period of time, he diagnosed me with TLE (though he didn't actually SAY that, he just freaked me out by talking about cutting off scarring on my temporal lobes - I really need to talk to him about that), sent me for an MRI, and I should get the results back this week.

After the TLE diagnosis, I started looking it up online.  I now realize that I have had seizures in the last 5 years that I didn't recognize as being seizures.  And they are in the same time as my migraines, which fits catamenial TLE, which I've read can get worse as a woman gets older (lovely).  On a side note, reading about temporal lobe abnormalities in general has made a lot of my "personality quirks" make a LOT more sense...

To get to the point - my new boyfriend is a very, very, VERY uber-positive person.  He doesn't want to hear about anything bad.  He could deal with my epilepsy because I hadn't had a seizure for 5 years and had only had 4 in my life - but yet he went straight to his sister and told her all about it and my migraines (call me silly, I had never met her, I resented him telling her about it).

Now, when I told him that the dr said my TLE might be caused by scarring and they could slice it off, he said "Ew, that sounds yucky.  But on a lighter note, did you hear about..." and totally changed the subject.  When I brought it up again another day this week, he said that he was sure the dr would find that there was really nothing wrong with me.  HELLO, the epilepsy diagnosis was 25 years and 4 "major" seizures ago, there is definitely something wrong with me.  Scarring might actually be a good thing, because then they COULD "slice it off" (the dr just sounded TOO enthusiastic when he said that).  True, I don't know if I'm a candidate for surgery since I'm not having grand mals, but still.  He seemed to think I was.

I don't know what to do.  The man will be 34 Tuesday - he's a wonderful man, but he's apparently never had to deal with anything bad in his life, and he doesn't want to.  I suppose none of us wants to deal with BAD stuff, but he just  - I don't know how to put it.  I have a migraine.  I'm just frustrated.  If my epilepsy *does* get worse, or I *do* go through surgery, I don't know if he will be able to cope.  I don't know if he is unwilling to cope or simply unable to cope.  I suppose I need to find a support group around here, or an informational class, or something for him.

And I don't know if I want to be in the kind of relationship where I can't talk to the person about my fears.  Ian and I talked about everything and anything.  He was my rock, and I was his.

A month ago, I thought we would be getting engaged in the next few months.  We've already picked out names for our kids, if we have them.  Now...  I don't know.  I don't want to be alone forever, but it's better than being in the wrong relationship.

Comments

RE: New boyfriend doesn't seem to want to deal

Submitted by Belinda on Sat, 2005-06-11 - 06:27
This man is definitely not worth your trouble.If he can't handle dealing with bad things in his life he has a problem.This man sounds like he has issues he needs to deal with before he gets into a relationship.There are ppl out there who will except you for yourself when you have epilepsy.I'm married to a great man who also has epilepsy.He had brainsurgery in 1972 has had a seizure since.He's best thing that ever happened happened to me.He has seen me through rough times and med changes seizure increases.I met him at an epilepsy support group meeting.There are ppl who will except you for who you are not freak when you say seizures.I dated plenty of guys before I married who had no problem with my epilepsy/seizurs. Belinda

RE: RE: New boyfriend doesn't seem to want to deal

Submitted by batman0070 on Fri, 2005-08-05 - 03:04
I'm 42,and an epileptic,and can relate from a mans point of view. I get alot of positive input however it's now always as easy as it sounds. Women find it hard to deal with and are afraid to date in the first place. It was hell on my ex fiencee and she could never totally understand. Since her all I get is stood up. My solution was to stop dating all together. That's just me however. I'm too old for that game now.

RE: New boyfriend doesn't seem to want to deal

Submitted by ButterflyGrl on Fri, 2005-08-05 - 08:34
I'm new to epilepsy myself. I was diagnosed on 07/29 after having my 2nd GM seizure only 1 month apart. I've been with my bf for a year this month. He has been cancer free for 1 year (he had testicular cancer 1 year ago, and a orchiectomy). I sometimes think to myself that he doesn't understand, but then I take a step back and say, "IT COULD BE WORSE". I look at him and he is the poster boy for someone who's chin is held high for a life threatening disease. His addictive personality is contagious, and he is never in a dull mood.When I feel depressed, or down (part of my side effects of meds), he has a great way of coping with it. But sometimes, I frustrate him, and he walks away from me to cool off. I hate it. But at the same time, I was in his shoes once, thinking I was invincible, when I would console him about every ache and pain before his cancer checkups, and I would say, "It's ok. Everything'll be ok", and he would say, "NO IT WON'T!"....and 1 year later...he's still cancer free, and not experiencing those "aches and pains" of stress, and of course, I am still there by his side, because I CHOOSE TO BE.Basically, my point is, it's hard to be the person on the other end who "isn't" experiencing what you are, because they don't know ENOUGH about it. I myself, have tried to explain to my friends about my condition, and they say, "What is that?". So, I explain it to them, and they immediatley react. Some ppl say you have to experience it to understand it. That's partially true. Really, what your boyfriend needs, is a little more compassion, and knowledge. Maybe perhaps he changes the subject because he knows how sensitive it is, and doesn't know HOW to deal with it? It's not his fault. Nor is it yours. You have to make the conscious choice to adapt to the way he deals with it. If its constant support you are looking for, and you feel he isn't giving that to you, then you have to make that known to him, and ask him if he WANTS to be THE ONE to be by your side to help you get through it. Give him the OPTION. Don't make him feel that he HAS to. Because I'll tell you one thing, you just might appreciate it more yourself, when you know he has THE OPTION to be there, than someone who feels THEY **HAVE** to be there. That way, you will be able to understand how he REALLY feels about you.Best of luck.

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