How do you feel when someone actually wants to know all about your epilepsy situation

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kirsten

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I just had a first time experience. I went to visit an old friend and she really delved into absolutely every detail about my current situation with epilepsy--the medication problems, why they were happening, which medications were problematic, what the future looked like, what sort of seizures I was having, what I felt afterwards, what she should do if I had a seizure, everything.

I have to say that mostly I felt it caused a lot of wasted time where we could have been talking about more interesting things. So many of us feel isolated because people don't know what's going on with our epilepsy, and so many of us feel dissatisfied by the fact that people don't want to hear about it. I felt/feel that way, too. I've seen the sort of fading out expression that happens when you mention your epilepsy and that is intensely isolating. But now that I've experienced the opposite, my response is not particularly positive. I suppose it has left me with the knowledge that I have a friend who is actually involved in my stuff, and I now think she is a solid friend. Well, I knew she was solid, but not as solid as this.

I am curious to know whether any of you have had a similar experience and how you felt about it? :pop:
 
I know what you mean. I think it's nice when people are curious about epilepsy, since more often it's the opposite. But I feel like it's only a small part of my identity, and it can feel diminishing when someone fixates on that to the exclusion of everything else. And sometimes (often?) epilepsy is the last thing I want to think and talk about.

Fortunately my friends are pretty responsive, so I can more-or-less set the conversational boundaries where I please (and I hope they can do the same with me). If you find your friend is going a bit overboard, you should just let her know.

[I'm reminded of a study done with sufferers of back pain. When well-meaning friends/family members would ask the patient how their back was feeling, that would make the back pain worse -- probably by activating the component of our brain that is responsible for the placebo and "nocebo" effect. In these cases, it was more beneficial to avoid mentioning the topic.]
 
I think I heard about that study. You've put your finger on the issue I couldn't identify: epilepsy is only a small part of my identity and we spent about a quarter of our time together talking about epilepsy. It did feel diminishing. I didn't get the impression that she was curious as much as concerned, and certainly, she'd be responsive to boundary setting. I didn't quite know what was going on because nobody's ever taken that much of an interest but now that I'm aware, I can handle it better.
 
On rare occasion I have run across the people who a really interested and want to have a better detailed knowledge of what is going on. It was odd the first time but I always feel better about the world when someone cares enough to really ask and listen. There are those few that ask but don't want a real answer, they just want to pretend.gh The people I find the worst are the people who know nothing and try to relate to you.
A person tells me once "I had a dog growing up that had Epilepsy so I know where you are coming from." Yep a dog, just the same as us. Nothing worse than when I am trying to sniff another person with Epilepsy's butt and one of us has a seizure!
 
knothing said:
A person tells me once "I had a dog growing up that had Epilepsy so I know where you are coming from." Yep a dog, just the same as us. Nothing worse than when I am trying to sniff another person with Epilepsy's butt and one of us has a seizure!
Click to expand...

:roflmao:

Hooboy. A dog. Unbelievable.
 
I share these thoughts as well. On the one hand I have friends/family who assume to know it all (they don't) and don't ever ask about epilepsy, how I feel about it, etc. and their lack of understanding makes me feel isolated from them.
On the other hand there are a couple of friends and a couple of family members who can't seem to talk about anything else except the seizures, the medication, how I feel, etc. It is the first thing they want to talk about when they talk to me, and so I realize they identify me first as "the sick person". And I find I try to change the subject quickly with these people - epilepsy is not my identity.
So on the one hand I feel isolated and frustrated with those who do not try to understand, and the ones that do try to support and understand I change the topic of conversation!! How ironic is that?!
 
knothing said:
A person tells me once "I had a dog growing up that had Epilepsy so I know where you are coming from." Yep a dog, just the same as us. Nothing worse than when I am trying to sniff another person with Epilepsy's butt and one of us has a seizure!
Click to expand...

I once saw a dog go into a seizure at a ball field because he had somehow stepped on the electrical wire(s) that lit the ball field. My thought was, "glad it's the dog this time and not me," because there had been a time I did go into a seizure at the same ball field.

I have a friend who likes to know about my seizures, so for me it does give me a sense of belonging. Too many times I've had a seizure and people freak out and then later they see me in public and look and point at me like I am a some creep with an infectious disease. Or like my brother always tells me, "I can't relate."
 
It is, Jen. You've reminded me of one of the things I was happy to leave behind in my last town. I lived in a small seaside town and the boyfriend of the day spread the word of my epilepsy far and wide. I guess I couldn't hide it too well myself anyway. When I left I swore to myself that I'd keep my epilepsy a secret. I didn't tell anyone unless they were really close friends who I trusted. But when November struck and my epilepsy started acting up again, I found out it wasn't as much of a secret as I had thought it was. I live in a big city now, so I've no idea how it spread but more importantly why. Why is it interesting enough to be gossip material? And, like you, my family never asks and has no clue about anything to do with epilepsy other than that I have it.
 
There are times I am limited and life changes had to be made for the better. In a way epilepsy is part of my identity but I get to define how it is part of my identity.
I was just thinking back to how people have been in my life around heart attack and cancer survivors when they were recovering from treatment. They treat them the same as they do to me. People do circle around 'the sick person' inquire and for a time the ailment becomes their identity.
Maybe it is because we just see no end, no cure, no recovery period that it frustrates and isolates more?
I am thinking of that term survivor. Cancer survivor, heart-attack survivor and these are always an end. We can't really be epilepsy survivors maybe we are 'Epilepsy Surviving' or even better 'Epilepsy Thriving'

???
 
As the doc I just fired said, condition not disease. There's no end and it sucks. I kept is as secret as possible until the big one in the office last month, cat's out of the bag so not only co-workers but clients. Don't really like them knowing my medical details, but everyone's been so supportive, at least so far, that I'm not letting it get to me. But it does get to be a time suck and part of a description of my identity that I don't really identify with.
 
This is a very interesting topic. A dear friend of mine just spent the weekend with me and my condition came up. She does know about it but we never really discussed it at length. This time she asked for more details and I told her. She is a former teacher and does have some knowledge about seizures. She was very sincere and told me that if I ever needed anything to call her. It really made me feel good to know that there was someone I could count on to help me. My 2 sons live close to me. She lives 2 hours away but has told me that she would come down to be with me for 24 hr. eeg. My sons never even ask how I'm doing. Oh, couple of weeks ago my daughter-in-law almost caused me to have a seizure, then my son asked if I was taking my meds.
Everyone feels differently about this so I just thought I'd put in my 2 cents.
M
 
If someone ask about my epilepsy I'll answer questions.But when they get ridulous asking the same thing over and over which has happenened many times to me it annoys me.
 
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