Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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 38benny on Sun, 2005-04-10 - 16:37

You may not want to hear this but if you want someone to spend the rest of your life with, it needs to be someone who understands you and can appreciate what you are going through. Even if he doesn't have seizures himself he at least needs to have enough respect for you to listen and communicate with you about ALL aspects of your life MOST IMPORTANTLY YOUR EPILEPSY!

I was married to someone who started off caring about it and then just gave up and it helped ruin the marriage now I have someone that has the number one rule COMMUNICATE AT ALL TIMES - DON'T SHUT YOURSELF DOWN... IF YOU'VE GOT A PROBLEM TALK ABOUT IT... It seems like the guy you are with now is just afraid... tell him not to be.

JoAnne

You may not want to hear this but if you want someone to spend the rest of your life with, it needs to be someone who understands you and can appreciate what you are going through. Even if he doesn't have seizures himself he at least needs to have enough respect for you to listen and communicate with you about ALL aspects of your life MOST IMPORTANTLY YOUR EPILEPSY!

I was married to someone who started off caring about it and then just gave up and it helped ruin the marriage now I have someone that has the number one rule COMMUNICATE AT ALL TIMES - DON'T SHUT YOURSELF DOWN... IF YOU'VE GOT A PROBLEM TALK ABOUT IT... It seems like the guy you are with now is just afraid... tell him not to be.

JoAnne

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

Submitted by amanda725 on Fri, 2005-06-10 - 14:44

It has to be hard for him to talk to you about something that he knows nothing about.  Maybe you should sit him down and say, "look i really need your support and compassion."  Let him know that it makes you feel better just by talking about it and all you want him to do is listen.  I don't know about you but I like talking about it to people that I'm close with because it makes me feel better to just let it out.  My boyfriend has always been there, but still he has trouble understanding what I'm saying just because he's never been around someone having a seizure.  Just because he may not like talking about it with you doesn't mean he doesn't love you.  Maybe he is just upset to know that you're being put through this and doesn't like to think about it.  I would talk to him about it and let him know that it would mean a lot to you if he would just listen.  Men are just little weaklings sometimes!!!!  Good Luck!

Amanda

 

It has to be hard for him to talk to you about something that he knows nothing about.  Maybe you should sit him down and say, "look i really need your support and compassion."  Let him know that it makes you feel better just by talking about it and all you want him to do is listen.  I don't know about you but I like talking about it to people that I'm close with because it makes me feel better to just let it out.  My boyfriend has always been there, but still he has trouble understanding what I'm saying just because he's never been around someone having a seizure.  Just because he may not like talking about it with you doesn't mean he doesn't love you.  Maybe he is just upset to know that you're being put through this and doesn't like to think about it.  I would talk to him about it and let him know that it would mean a lot to you if he would just listen.  Men are just little weaklings sometimes!!!!  Good Luck!

Amanda

 

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

Submitted by Spiz on Fri, 2005-06-10 - 16:45

 I agree with Joanne and Amanda. Stress how important an issue it is to you that he be willing to discuss your epilepsy with you. That it not only makes you feel better to talk to him about all the aspects, fears or confusion you may feel but that it helps you to not feel so alone with it. I wish you both the best!

-Spiz

 I agree with Joanne and Amanda. Stress how important an issue it is to you that he be willing to discuss your epilepsy with you. That it not only makes you feel better to talk to him about all the aspects, fears or confusion you may feel but that it helps you to not feel so alone with it. I wish you both the best!

-Spiz

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.