How to deal with the embarrassment after a seizure ?

[yogurt]

Hey ! My name is Ava, I am from Britain. I live in university halls, and I frequently have seizures, 4-5 times a week. Last night, I had a seizure front of the staff working here. I feel so embarrassed, it's not the first time, I have seizures front of people here. When it happens, I feel like dying and I cry a lot because I am an adult now, and imagining myself on the floor, wetting myself embarrasses me so much. Sometimes I wish I was just dead. Moreover, they are very rude to me. Asking me if " I am not just drunk and trying to get attention" It's so hard, I feel like a piece of sh*t.

I've been having epilepsy for 10 years now, I am 21 and been at university for 3 years.

 

[masterjen]

Hi yogurt and welcome to CWE;
Have seen your neurologist lately to talk about getting your seizures under better control? If you have and were told something like "this is the best we can do", then you may want to consider getting another opinion to make sure some treatment options (medication or otherwise) are not being overlooked.
The embarrassment thing is very individual in that some people have the type of personality that they don't get embarrassed easily and others do. Simply saying "don't be embarrassed" is not helpful in the least! One way that may help you in this regard is to ask those who witnessed your seizure how they honestly felt. My guess is they will say things like "frightened" and "unsure what to do". I don't think any of them will say "I thought oh gross you peed your pants". If you are comfortable with it, you could tell people who are most likely to witness a seizure exactly what may happen, and if you include that wetting your pants is common (and common for many people who have your type of seizure, you could add) over time it may become more of a fact and less of a point of embarrassment. Good luck!

 

[seagull]

I can't add anymore what masterjen..I suppose you could use some minor form of sanitary stuff if you feeling that bad but honestly the people who see you having sz that be last thing they be thinking about

 

[Nakamova]

Hi Ava, welcome to CWE!

It sucks that the people around you aren't more empathetic. There will always be clueless folks around who don't understand seizures, and/or who make you feel self-conscious. You shouldn't worry about what other people think (I know, easier said than done), and instead focus on ways to pre-empt their concern. If you're having that many seizures, maybe it would make sense to educate some of the folks around you about what a seizure is, and how they should treat you when you are having one (with respect and care).

 

[Jezy]

Nakamova is right, try not to focus on insensitive people but educate people you care about, I have had the bladder problem and I know it is embarrassing. Try and keep your chin up and not worry so much it can be a trigger.

 

[valeriedl]

I agree with what Nakamova said. Try to tell the people around you the most what you do during your seizures and how they should respond to them. When most people hear the word 'seizure' they think of someone shaking, they don't realize that there are many different types. Let them know it's normal the things you do and you are NOT trying to get attention.

Do you wear any sort of medic alert bracelet that lets them know you have epilepsy? I don't know if maybe getting some sort of letter from your neuro explaining what seizures are and what happens to you during them to give to who ever you feel would be best at the college. This may help them in knowing what is going on.

 

[Belinda5000]

Hello Ava,
welcome to CWE

why be embarrassed when you have a seizure? you can't help having a seizure. I'm not going to apologize for something I can't control except when I know I hit someone because in my simple partials I see what is going on in my seizures.
I will tell people that's just life my sz's and they could be worse and have been. If someone can't handle my seizures there the one with the problem.Live life to the fullest.

 

[llanarth]

I know where you are coming from. I didn't have a bladder problem for years, until recently. Now I have started having seizures at work but with the additional problem with my bladder. It is embarrassing and unpleasant too. Even though people at work are understanding, it's not a nice position to be in.

I don't know who these people are, but if you're living next to them, it may be worth letting them know you have epilepsy. However, I think if possible you need to try and find additional seizure control if possible whether through drugs, or other means. It's worth looking into diet, and other triggers. This is my main goal and what I am trying alongside medication...I think it's worth a go.