Do you ever feel like a super downer talking about epilepsy to friends?

[whateverandeveramen]

Hello forum folks! Never posted before. I have temporal lobe epilepsy and the past few months have been rough. Stress at work; insomnia issues; lots of random simple partial seizures.

To boot, I had to switch insurance companies and had to fight to get all the phone calls/authorizations made for my Lamictal to be covered under my new plan, so I was without medicine for a few days, which threw me for quite the loop.

I want to be able to always vent to / be honest with my friends/family, but I don't want to stress them out too much or sound like a broken record of, "My head hurts so much and I just want to feel like myself," which I feel has been the case lately. Unfortunately, epilepsy isn't like a cold, which makes you feel bad for a few days, and you complain a bit, and then all is well.

How do you handle talking about bad epilepsy days? Do you ever feel like you're talking about it too much?

 

[Belinda5000]

No I don't feel like it's a downer.My friends ask me questions about my epilepsy and I gladly answer them as best as I can.I've explained to my friends what to do if I have a sz and than I have explained I have several different kinds of sz's to them.I've also had to explain about my triggers to them also, and it's when there a true friend that they don't freak and they ask you questions.

 

[arnie]

Hi and welcome! I know what you're saying. I've had epilepsy for about as long as my wife and I have been married (almost 34 years!) and it is still hard for her to see me having my partial seizures and to talk about it very much. I think the best thing you can do if you need to vent is to come here and talk to us about it. People who don't have epilepsy can't really understand what we're going through, and our family and friends can be scared and freaked out by it, which makes it hard for us to talk with them.
I guess my answer to your question is that I try not to talk too much about it to people who don't have it. If I've been having a particularly seizury day I'll say that to my wife, but mostly I downplay it. One of my daughters has epilepsy, so I can talk to her about it. Otherwise I either keep it to myself or vent here.
Onward and upward!

ps: I don't mean to imply that I don't talk about epilepsy, because I have no problem telling people I have it, or discussing it or educating them about it, but as far as venting goes, it's nice to have someone who is in the same place I am. It can be pretty hard to explain to people just how epilepsy makes us feel, affects us, etc. so it's good to have people who know what we're talking about and we don't have to explain stuff to or worry that they will be nervous or scared for us.

 

[masterjen]

It helps to talk about the bad days, or in my case when I have had a bad night that ends up affecting me the next day. But I am fortunate in that I have one person - my Mum - that wants to know what has gone on, and talking it out with her helps me start to focus on other aspects of my day and not just the seizure and post-seizure issues. When I have to cancel out on something because of a seizure, I say why and leave it at that. When my friends ask questions about the seizures etc., I answer fully but then will change the subject and ask something about them. Everyone has issues and problems, and focusing on issues others have helps me put my own into better perspective. I'm alert to not wanting to sound like I'm thinking of myself too much, but admittedly there are times I do, like when issues arise with med. problems, seizures and after-effects, having to cancel work, a neurologist appointment, etc.

 

[Nakamova]

Hi whateverandeveramen, welcome to CWE!

I agree that a great place to vent is right here. Even just writing about the tough stuff (here or on old-fashioned paper) can help get it out of your system. It's a bonus if you have a good friend or family member who will let you offload some of your bad stuff on them. Just make sure they know that you will return the favor if the need arises.

 

[Penny]

I agree, here is a good place for me. In my family we are not ALOUD to talk about illness. Sounds stupid I know. My Mom has cancer now and everyone has talked about it that last 2 years. During that time I have suffered a stroke, developed epilepsy within a month due to a lesion from the stroke, had cancer of the thyroid and had it removed. Not a single family member or my Mother has taken care of or even called to find out how I'm doing. Oh well! Sometimes that's the way life is.

I'm glad I found This place though so I can ask my silly questions and I have real answers. Thanks everyone.