What to tell friends and family?

[freddfish]

Hey, ya'll,
A newbie here...I browsed the forum looking for an answer to this, ather than starting a discussion thread right out of the gate, but met with no success. So WTH, here we go.

I have had a couple of seizures in the past 3 years, and I would like to know the best way to tell my friends and extended family about my apparent epilepsy in a way that won't seem awkward or weird, or make them patronize, pity, or feel uncomfortable around me.

Tall order, huh?

I also would like to know what your thoughts were on what an attending helpful person should do immediately following a seizure....go through the 20 questions (name address birthdate location phone# cat's name etc) to assess the need for medical care? Run get help?

What should I tell folks to do if I am around them when it all goes down?

Thanks in advance for any help on this. Ya'll have a good one.

freddfish

 

[huskymom]

Hi fredfish and welcome to the party!!

If they are your friends, real friends, then just tell them about your issues and what they can do. If they can't do that for you, then they should tell you. If you want to tell family members, just remember that some people are pretty lost in old wives tales about epilepsy. Try to bring them out of the stone ages. While some will be very supportive, some may not. Try to understand that this may come as a surprise to them. don't be mad if they don't come around right away. It may take a little time, but then if they can't be there for you, then let them go. After all if they were to tell you that they have this problem, you would be there for them. Some people are not able to deal with any type of "sickness". We will always be here for you. So if you need us, let us know

 

[valeriedl]

I don't know what type of seizures you have but when most people hear the word "seizure" they think that you are going to fall to the ground and start shaking like crazy. Most people don't realize that there are more types of seizures than just that.

Explain to them to stay calm and to make sure you don't do things to hurt yourself, but make sure you tell them not to hold you down to the ground so that you can't move.

When I have a seizure I usually stare off into space, mumble words, drool and things like that. Sometimes I will like to pick up things and play with them but if it's something that I may hurt myself with then someone will take it off of me. I'll even get up and walk around too. They will get me to sit down in a chair or on the floor, but not forcing and shoving me to do it.

When I start to come around then I tell them to ask me the questions. If the seizure lasts more than 15 minutes or so and I'm not coming to then I tell them to get ahold of my husband or mom or dad and see what they should do next.

The first seizure I had with my husband was when we were dating. He called my parents and they told him to wait about 10 minutes and if I wasn't coming out of it then to call them back. I actually ended up in the ER with that one. He managed to stay calm through the whole thing though, plus he's still here with me.

Only one of my friends has seen me have a seizure and that was when I was first diagnosed. She flew in from out of state to see me in the hospital so she saw the seizures when they were at their worst.

I finally (I hate to put it that way) had one in front of my husband's son, he's 25. I know he really didn't like being alone with me because he was afraid that I would have a seizure and wouldn't know what to do. My husband was with us at the time so he saw what I do when I have one what my husband did until I came out of it.

As huskymom said, it may take a little time for people to understand what's going on with you, and if they can't then they really aren't worth keeping around.

 

[freddfish]

I don't know what type of seizures you have but when most people hear the word "seizure" they think that you are going to fall to the ground and start shaking like crazy. Most people don't realize that there are more types of seizures than just that.

Explain to them to stay calm and to make sure you don't do things to hurt yourself, but make sure you tell them not to hold you down to the ground so that you can't move.

When I have a seizure I usually stare off into space, mumble words, drool and things like that. Sometimes I will like to pick up things and play with them but if it's something that I may hurt myself with then someone will take it off of me. I'll even get up and walk around too. They will get me to sit down in a chair or on the floor, but not forcing and shoving me to do it.

When I start to come around then I tell them to ask me the questions. If the seizure lasts more than 15 minutes or so and I'm not coming to then I tell them to get ahold of my husband or mom or dad and see what they should do next.

The first seizure I had with my husband was when we were dating. He called my parents and they told him to wait about 10 minutes and if I wasn't coming out of it then to call them back. I actually ended up in the ER with that one. He managed to stay calm through the whole thing though, plus he's still here with me.

Only one of my friends has seen me have a seizure and that was when I was first diagnosed. She flew in from out of state to see me in the hospital so she saw the seizures when they were at their worst.

I finally (I hate to put it that way) had one in front of my husband's son, he's 25. I know he really didn't like being alone with me because he was afraid that I would have a seizure and wouldn't know what to do. My husband was with us at the time so he saw what I do when I have one what my husband did until I came out of it.

As huskymom said, it may take a little time for people to understand what's going on with you, and if they can't then they really aren't worth keeping around.

huskymom writes

If they are your friends, real friends, then just tell them about your issues and what they can do. If they can't do that for you, then they should tell you. If you want to tell family members, just remember that some people are pretty lost in old wives tales about epilepsy. Try to bring them out of the stone ages. While some will be very supportive, some may not. Try to understand that this may come as a surprise to them. don't be mad if they don't come around right away. It may take a little time, but then if they can't be there for you, then let them go. After all if they were to tell you that they have this problem, you would be there for them. Some people are not able to deal with any type of "sickness". We will always be here for you. So if you need us, let us know

Thaks for the good replies, the pair of you. I told my son to do the 20 question routine when I came out of the last one....he came through pretty good for a kid in his late teens.

As to the kind of seizures I have had....the one three years ago was a full-on grand mal....fell to the ground, thrashed around, drooled, lost control of my body's natural functions, and was out for 15 mins. This last one hit with a highly diminished severity....didn't fall out of the chair I was in, but still had my uncontrollable right foot twitch, which is the last thing I recall both times before everything went.

The family would probably be OK...I just need to tell them what they are in for. They are good people.

The thing I don't like about all this is that the whole idea of seizures and epilepsy makes people look at you funny, and I don't like people looking at me funny.

Look. I got no room to bitch, and I am not looking for sympathy. PLENTY of folks are way worse off than I, epilepptics and otherwise. Any day I can get out of bed and pick my banjo is a real good day.

Thanks again, and Sláinte chugat

Fred

 

[Lola Lolushka]

Heya,

I know it can be embarrassing, telling people – but I made the decision a while back that the only times I will tell people that I have epilepsy will be 1) when I am good and ready, and 2) if a seizure is imminent and I need to warn them. I’ve noticed that if people see that you are not 100% confident in yourself despite having epilepsy or whatever, they will be more likely to react in an awkward fashion. But if they see that you are calm about it and have accepted it, it will be more of a conversation and less of a shock announcement.

A lot of people I have told seemed relieved that I wasn’t about to pour my heart out to them – because really, not that many people really know what epilepsy is all about and a lot of the time if you let them ask questions if they want to, it will be easier for both you and them.

There isn’t really a whole lot you can do – I just tell people that all that matters is that you are safe, not alone, and will be getting medical attention.

I know what you mean about how a lot of people have it more severe - I was told once "worse things have happened to better people" - and although it kinda hurt at the time... It's true!

 

[freddfish]

Heya,

I know it can be embarrassing, telling people – but I made the decision a while back that the only times I will tell people that I have epilepsy will be 1) when I am good and ready, and 2) if a seizure is imminent and I need to warn them. I’ve noticed that if people see that you are not 100% confident in yourself despite having epilepsy or whatever, they will be more likely to react in an awkward fashion. But if they see that you are calm about it and have accepted it, it will be more of a conversation and less of a shock announcement.

A lot of people I have told seemed relieved that I wasn’t about to pour my heart out to them – because really, not that many people really know what epilepsy is all about and a lot of the time if you let them ask questions if they want to, it will be easier for both you and them.

There isn’t really a whole lot you can do – I just tell people that all that matters is that you are safe, not alone, and will be getting medical attention.

I know what you mean about how a lot of people have it more severe - I was told once "worse things have happened to better people" - and although it kinda hurt at the time... It's true!

This strikes me as sound advice as well.....although I think the "worse things have happened to better people" line bordered on insult, it DID contain a grain of truth.

I was feeling a little sorry for my self after the first one....until I realized there are folks with epiiepsy that have seizures on a nearly daily basis. One needs to step back and count their blessings sometime

 

[Lola Lolushka]

Yeah that’s why I was a bit cut at first – but to be honest, I really do believe it now! This website has been an absolute dream, I joined up when I started to withdraw some of my meds, and the people are so lovely – I’d never been able to REALLY talk to people about it before. And yes, so many have to deal with it 10 times worse.

Very good place to vent...