Who in the public do you tell?

[ddr1166]

Hi all - quick question from a spouse whose husband recently diagnosed with E -

As a spouse, there are things like -

if he changes his gym membership (to be closer to home), do you disclose this? Will people at the gym freak out or want a doctor's release or something?

Has anyone experienced issues like this where people treated you differently and wanted "proof" the person was ok?

I also thought of this recently as we were on vacation and got a massage----we thought it better NOT to reveal the truth, as we didn't know if they would do it without a doctor's note or something.

Cheers and thanks, D

 

[epileric]

I've had numerous experiences where knowing about my seizures had made a definite change in how I was treated (always for the worse).

The people I am honest with are usually medical or alternative type medical people. I was honest about it with my yoga teacher & she took it so casually as if to say "no big deal" and am always honest with doctors & people of medicine.

I have gotten tired of people asking me to warn them if I'm about to "do the chicken" though and for that reason have found that not telling people creates less problems, even if they do eventually find out because I have a seizure (convulsive or otherwise) in front of them.

 

[Endless]

Hey, I tell people who have a need to know, and no one else.

People can't treat you differently or discriminate against you because of your seizure disorder. It's against the law. But on the other hand, I didn't tell my water aerobics instructor because I was afraid they wouldn't let me continue. My doc told me not to swim, too, so I'd be up a creek. (no pun intended)

I do tell doctors.

 

[travel bug]

if he changes his gym membership (to be closer to home), do you disclose this? Will people at the gym freak out or want a doctor's release or something?

It can be a risk, but you can be pleasantly surprised sometimes. I joined a gym after my physical therapy ran out after surgery. I had signed up with one of the assistants but didn't work out until the next day. The owner was there that next day and I was afraid he'd see me hobbling around on my cane and worry what kind of risk I'd be. I raced through an explaination of everything trying to reassure him that I wouldn' t be a risk... yada, yada, yada. But surprise, surprise, he was very supportive; he said his son had epilepsy and he wasn't worried at all about having me there. Whew!

I know it doesn't always work out that way, but there are people out there who understand.

 

[Meetz1064]

Mmmmm

I tell those in medicine, of course.

Other than that, unless I am going through a major med change, and feel super shaky during it, I tell no one. I AM doing that, I pick one or two people in the job environment that I am in, for example, explain the situation and pray for the best.

I've not had any problems so far.

 

[dfwtexas]

I am very protective of who knows...but the funny thing is I can be having a discussion with complete strangers and tell them! Since I have an arm the is very different, it can be a conversation starter and if I am feeling comfortable I will explain my current situation.
All medical personnel do need to know, but I am guarded. I have been wanting to go to local gym and figured they would not accept me if I disclose my E, so I haven't gone...maybe I should try and see?

 

[ddr1166]

Hi dfw - I would! What have you got to lose? Anything to increase confidence and personal power, I say "go."

 

[valeriedl]

Any time that I do something that is in public with out my husband being around I tell the people that I'm going with. I don't want them to get scared if I were to have a seizure and not know what's going on with me. All of my close friends know and they know what to do if I were to have one when I am with them.

I'm not ashamed that I have it, I just don't start out a conversation with someone I just met by saying "Hi, I have Epilepsy. What do you do for a living? Have any type of illness your self?" If a question comes up in the conversation about something that I may not beable to do because of it that's when I would tell them. Other than that I don't think everyone in the world needs to know.

I would defently tell any type of dr that you go to. They may pescribe a medicine that could react with one that you may already be on and that could be really bad.

I would ask your neuro about something that you were considering joining or doing. I know he said to me that I should stay away from the big time rollercoasters at the amusement park that I was going to. Ones that flipped upside down alot or ones that had super duper drops in them. I think I may have gone on one or two of them and ended up ok.

If you are going to join some type of class that could be exerting I would tell someone there. Either the instructor or someone that is in the class that you feel comfortable telling, just incase you would have a seizure there and people wouldn't know what was going on with you.

 

[Nakamova]

When I joined a gym they required an okay from my doctor (just as standard procedure -- this was before they knew I had epilepsy). And my doctor sent them a standard reply saying there was no problem. So no, the gym didn't know about my epilepsy, and my doctor didn't think it was important for them to know. But if I had felt at all nervous, I would have told the gym, just so they would know what to do in the event that I did actually have a seizure. I think in many cases, you just have to make the call on a need-to-know basis that takes into account the risks and your own comfort level. You can't predict the response if you do tell someone, but you have to weight that against what might happen if you don't.

 

[valeriedl]

I got to meet Dave Matthews from the Dave Matthews band last week. I was so excited to be meeting him that I told him I have epilepsy and have bad memory problems and that this would stay up there so I would't forget it. I know that he didn't need to know and I really didn't mean to tell him but I was just so excited it came out. I wasn't trying to make him feel bad for me either.

Luckily he understood. He told me about a friend of his who has epliepsy too and that it sounded like the two of us delt with the same type of issues. We actually had a nice little talk about it, which was nice.

 

[PhylisFeinerJohnson]

I used to only tell those who NEEDED to know and those people that I trusted. Now that I'm older (and presumably wiser!) I have more confidence in myself and tell anyone who's curious. If it freaks them out, so be it.

I became an epilepsy advocate for a reason. And that was to educate the uninformed AND the misinformed. So, I live my life with that purpose.

 

[Naomi55]

I got a facial and the esthetician used some tool that made me feel like I was going to have a seizure... I stopped him and told him about my seizure disorder, he assured me this wasn't contraindicated... I told my sister about it (who is also an esthetician) and she said it absolutely, positively is contraindicated in a person with a history of seizures. It reinforced for me the importance of being honest on those intake questionnaires; even though you still need to trust your provider.

 

[dfwtexas]

After being on the Keppra XR and having hair loss, I explained I have E and had problems with a change in meds and needed her to be aware so she could cut my hair and hid the bald spot! Turns out she has E too.

 

[Cint]

Since I have an arm the is very different, it can be a conversation starter and if I am feeling comfortable I will explain my current situation.
All medical personnel do need to know, but I am guarded. I have been wanting to go to local gym and figured they would not accept me if I disclose my E, so I haven't gone...maybe I should try and see?

I too, have an arm that looks very different, due to a seizure. Years ago, I had my 1st TC seizure on the way out of the shower and fell, hitting the hot water, ending up with 2nd and 3rd degree burns on my arm and back. I had several surgeries and skin grafts due to that accident and now I have an ugly arm that can be a conversation starter. So if/when people ask what happened, I don't hesitate in telling them what happened. I feel if it happened to me, it could happen to anyone. I told my son when he was growing up with asthma that my "brain disorder"-- epilepsy, like his asthma, was nothing to be ashamed of. They are both medical conditions to be dealt with. Aren't we out of the DARK ages by now? And besides, I've had CP and TCs in public, so I had to "get over it".

I used to belong to a local gym and even had a personal trainer, who had even witnessed a few CPs, so they learned not to panic and take it slowly. I looked at it as an opportunity to educate folks about epilepsy.

 

[dfwtexas]

I too, have an arm that looks very different, due to a seizure. Years ago, I had my 1st TC seizure on the way out of the shower and fell, hitting the hot water, ending up with 2nd and 3rd degree burns on my arm and back. I had several surgeries and skin grafts due to that accident and now I have an ugly arm that can be a conversation starter. So if/when people ask what happened, I don't hesitate in telling them what happened. I feel if it happened to me, it could happen to anyone. I told my son when he was growing up with asthma that my "brain disorder"-- epilepsy, like his asthma, was nothing to be ashamed of. They are both medical conditions to be dealt with. Aren't we out of the DARK ages by now? And besides, I've had CP and TCs in public, so I had to "get over it".

I used to belong to a local gym and even had a personal trainer, who had even witnessed a few CPs, so they learned not to panic and take it slowly. I looked at it as an opportunity to educate folks about epilepsy.

I would rather someone asks me rather then stare, but try not to get caught. Also, mine happened from walking my dogs. And I do warn other dog owners about my experience. The first year after multiple surgeries and many different devices to repair my arm, I would wear a sweater even in the hot Dallas summers. But I have learned how to "wear my scars proudly". I guess I am still in process of wearing my Epilepsy proudly. I was looking at a gym website and saw the personal trainee option and thought that might be a good option too. Thanks!

 

[vapour]

these days.. nobody. a select few know I have epilepsy..its so mis-understood. PLUS I have TLE and cannot be bothered explaining the ins and outs of that to someone.

EVen medical professions dont know what TLE is.. so how do I expect anyone else to?

 

[knothing]

I tell any medical people I deal with and also tell all the coworkers within my immediate area and anyone who asks why my hands shake. They shake like some who is detoxing at times and I think it is better to have Epilepsy than be an addict. I really don't care who knows and want no sympathy. I will educate anyone who wants to know. but in my opinion the more I just don't care in front of others the less stigma there is.

For the record I had no choice about coworkers because I had a TC in front of them and that actually helped. Nothing like a TC to break the ice. But what do I care it's just E.

 

[Westwind]

I used to avoid telling anyone, but I don't hesitate to mention it like I used to. Perhaps it's being older, perhaps it's because I'm tired of hiding it, tired of being embarrased by it..... and I'd rather people understand that if I have a seizure, they just need to let me get through it and recover. Rather than them freaking out, calling 911, and trying to stuff something in my mouth.

And I also feel that it's increasingly important to help educate the general public by making them more aware of it.

Even though.....no matter how much I explain, and re-explain, no one ever understands what I go through. I'm constantly amazed that people that know my conditions and limitation still expect me to perform as if I'm completely normal.

People can't treat you differently or discriminate against you because of your seizure disorder. It's against the law.

It may be the law, but they do it anyway. All the time. Every day. But I certainly don't have the ability to tolerate the stress of filing lawsuits to enforce discrimination laws. And you certainly can't call the police to enforce soemthing like that. The law makes the lawmakers feel good that they did something, but it really doesn't do alot to actually protect us.