Attitudes toward people with epilepsy.

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Matthew74

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This isn't about stigma per se, but about how people without epilepsy look at and treat people with epilepsy. A lot of us get it from our doctors, even if they are great doctors and fine people, they just don't understand what it's like. A lot of us get it from our family, well meaning, but less than helpful.

When I was admitted to the hospital in Boston, a doctor there said something like, "Don't worry, we'll take care of you." He was trying to be nice but that made me mad, as if it's in their power to make everything ok, or that as long as they are "handling" things I shouldn't be upset. I was a wreck. I just watched a Mayo video about the EMU, and the doctor's demeanor gave me the same reaction. Like, "Oh, it's just taking you off your meds. We handle everything. Nothing to be concerned about." These people have no idea. It's one thing to watch a seizure, or to treat people having seizures. It's another entirely to have a seizure. It's like the difference between reading a menu, and eating dinner.

It seems to me that people with epilepsy are depersonalised in the view of others. I was reading the article Benard posted about the girl in the Tower of London. I liked the article. The guy who helped her obviously cared about her, but in the story the girl seems like an object, rather than a person. The author even supplied her name, including her last name as far as he could remember, and where she was studying, without asking her permission.

I feel like yelling at them, "The problem isn't the EEG, or that I passed out, or that I got banged up. The problem is that I have epilepsy everyday, and I have to live it." I feel like telling the doctors, "No, you are the one that doesn't get it." It just seems very ignorant or thoughtless.
 
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I also read the article and I believe that he had posted her name because he wanted to know if anyone knew who she was to find out if she was ok - just my opinion though.

I think it depends on who the medical professional is that will say "Don't worry, we'll take care of you."

I don't think my neuro has ever said that to me. He will usually say something like "Let's try this and see how it works". He tells me what might happen good or bad when we try this and lets me make the final decision. I don't think that he's ever told me that by doing something, medicine or surgery, means that it's going to stop my seizures. Even when he suggested I get a VNS, which I did, he never once said it was guaranteed to stop my seizures. He said that it might only reduce my seizures and they wouldn't be as bad, which is how it is working for me.

I know when my husband says "Don't worry, I'll take care of you" he means he's not going to be like the boyfriend I had when I had my first seizure. He stayed with me for a few months after it then didn't want to deal with the epilepsy and seizures. My husband means that he's going to stay with me and he's not going anywhere.
 
I used to try and have a sense of humor about it and laugh it off, but I lost that somewhere along the way. Now if I sense that attitude from someone, I get pissed. REALLY pissed.
 
I think what really bothers me is not that they don't understand, it's that it seems like they don't see that they don't understand. It's as if the experience of having a seizure or living with epilepsy can't be that complicated or difficult. Would anyone give a cancer patient the impression that getting chemo wasn't a big deal? I just think they could be more sensitive.

I also look at it like I'm kind of a pro at it, been to the hospital since I was 9, etc., so I know the drill, and hardly remember life without E. What about people who aren't adjusted to the diagnosis yet? How must they feel?

I don't want to be mad, but it is frustrating. I'm not being very positive, so I'll be quiet now.
 
Dear Matthew,
You can't change other people, only yourself. Don't let it get to You. I think we all have dealt with a few insensitives in our lives but what can we do? NO ONE knows what YOU are feeling except YOU.
I have come to appreciate those people in my life that ARE understanding of my situation and forget the rest.
Good Luck!
M
 
...
When I was admitted to the hospital in Boston, a doctor there said something like, "Don't worry, we'll take care of you." He was trying to be nice but that made me mad, as if it's in their power to make everything ok, ...

What could he have said in that instant that would have reassured you? I'm guessing they say that (or something similar) to just about every ER patient who is lucid enough to hear them. They see a lot of people every day and don't have any background on their condition, so I would imagine that they can't assume you have a history of seizures or that this would be "routine" for you. If it were your first, you might be quite fearful and his words could be reassuring.

... The guy who helped her obviously cared about her, but in the story the girl seems like an object, rather than a person. The author even supplied her name, including her last name as far as he could remember, and where she was studying, without asking her permission.
...

If he had been able to ask her permission, he wouldn't have had any cause to share the story in the first place. He was traumatized by the event and would genuinely like to connect with her and make sure she is OK.

My wife once witnessed a boy at the side of the road get hit by a truck. It traumatized her and she also spent the next few days trying to track him down to see if he was OK (unfortunately, that boy died hours after the event).

I believe it's the same dynamic in play. The trauma needs some closure.

I think your assessment that the author objectified the young woman is way off base. The attempt to connect is about as human and personal as you can get.

I also read the article and I believe that he had posted her name because he wanted to know if anyone knew who she was to find out if she was ok ...

Yep.
 
Matthew74

I think the problem with the way people with epilepsy are treated is more the lack of understanding which people have. Yes they need to be educated about epilepsy, but I do not think they want to learn. It is easier to shun someone than to understand them or even try to understand them and that is human nature it would appear.

You cannot expect others to accept, learn or understand if we, that is people with epilepsy, treat each other in the same way. Change starts at home. Its not just others who have to change or understand, we also have to change and understand others and their fears. Fear can make us do and say the most stupid things towards others. Why should you or I act like that, lead by example.

I totally understand, doctors can be condescending but then again so can I and more so. The thing is though they try their best to put you at ease which is not easy considering how hyper people can be, whether its after an accident or a seizure. A little reassurance helps put me at ease anyway.

I read the article Bernard posted as well and I think that man should be congratulated for doing his best and helping, yes he mentioned the girls name and other details, but only because he was concerned. If it was me I would want to know as well, but the young girl in question should be trying to find him to say thank you for trying to help me, that is just my thought. Maybe she is I do not know.

I read the article and the reply's, I must say I was less than impressed with a lot of the comments and even found them insulting especially the reply "did you feel her up" unfortunately idiots are easy find.

This is only my thinking but for others to understand me I have to first understand them and be willing to learn and teach.
 
I have a different take on the subject. Personally, I can't stand being placed in a position of inferiority just because of something I'm born with. I think many others, including the girl in the story feel the same way. So anytime people try to put us in that position, whether we're standing on our own or lying on the ground in the postical state...we shun them, even if we need their help and they're genuinely extending it.

There's a great video from the show Always Sunny in Philadelphia that portrays this perfectly from a male/female perspective.

I once had a seizure at school the day before my final high school spring football game. I was staying with friends and as soon as I came to I slapped the phone out of my friend's mom hand, apologized, and asked her to promptly take me to school and not call an ambulance. I slept in every class and started the game.

The reason I'm that prideful is because I never trust people when they say what valeriedl's husband says to her. With the exception of my parents and a close friend I know that has e, people can't deal with it. They secretly resent you for your condition and then move on elsewhere when it begins to limit what they can do.

The trippy thing is that I felt the same way about my friend with e when I first met him. My average was about once a month, and his was about once a week. I would only have seizures in the morning in private and he would have them all times of the day in many public places. Soon I began to hang with other people because he couldn't control his seizures. Goes right to what Fedup is talking about. It all starts with understanding.
 
I think what really bothers me is not that they don't understand, it's that it seems like they don't see that they don't understand. It's as if the experience of having a seizure or living with epilepsy can't be that complicated or difficult. Would anyone give a cancer patient the impression that getting chemo wasn't a big deal? I just think they could be more sensitive.

I also look at it like I'm kind of a pro at it, been to the hospital since I was 9, etc., so I know the drill, and hardly remember life without E. What about people who aren't adjusted to the diagnosis yet? How must they feel?

I don't want to be mad, but it is frustrating. I'm not being very positive, so I'll be quiet now.

Matthew - I agree. Many people I've met don't seem to realize how big of a deal having a seizure is. When I go into detail of the horrifying experience of having a tonic clonic it really shocks people.

I worked with a woman who thought having a tc seizure was no different than feinting. When I told her about my epilepsy, and how it's nothing like that, how awful it is, she said "are you sure?" One of the stupidest things I've heard in my life. I just walked away.

I'm of the attitude that if someone doesn't want to accept me because I have e, or treats me inferior, then I want nothing to do with them. My close friends and family are good to me fortunately. Sometimes you just need a hug, not someone who doesn't understand what it's like trying to fix the problem.
 
There are a lot of "hidden" medical conditions that people are afflicted by that others need to be further educated about and I have some of these.

Hearing loss:
-no, I am not asking you to repeat because I am dumb I just didn't quite hear you
-no, I am not a snob because I didn't respond to you; I didn't know you said anything

ataxia, with neuropathy and mild intention tremor:
-I am not walking like this because I have had a bit too much to drink
-my hands are not trembling because I am a "nervous wreck"
-(to my exercise group): no, I really cannot do that exercise because I cannot control my legs well enough and could fall

And now (as of 5 years ago) I add seizures to the list. Fortunately mine are nocturnal, but I am affected the next day and often am not good for much and have to cancel plans or work so I get the common: "Don't you like hanging out with us anymore?", "Calling in sick again? Sure you're not just bucking the system?" and not to mention the drifting off of those friends who are either fearful and choose not to understand, or don't like being canceled on too often, etc.

There are of course many other conditions people can have that trigger discrimination of sorts in others, including but not limited to MS, ALS, dysarthria, Parkinson's, Huntington's. For me, seizures are at least self-limiting; once the seizure and the after-effects are over, it's over. The others are chronic and constant.

How those around you deal with your affliction starts with you, and how you deal with the affliction(s). It is normal to become frustrated, depressed and even self-pitying sometimes. Taking the initiative to pleasantly let others know when they have done/said/misinterpreted something incorrectly about you or your condition is important, but even more important is to remain positive and mentally strong as these attitudes will come through from you to others. I find it helps to think of others worse off than me (eg. those with cancer, ALS, debilitating strokes, etc.) and this helps me realize I am not so bad off.
 
I thank you all for your very thoughtful answers. Genuinely.

Bernard: I didn't mean to offend you, or cast aspersions on your online friend. He did the right thing, he's a good writer, and I could see that he wanted to contact her. I'm glad that he, and you, posted it. I did feel that the piece humanized people with epilepsy. Sometimes when you are having a seizure, and can't respond to the people around you, you feel like you must look like an amalgam of body parts to them. Thank you for the forum!

Mr. 21T: That is exactly the way I feel.

Chris: "Sometimes you just need a hug..." Amen.

Jen: The recent experience with my back has been very good for me.

Everyone:

I'm sorry I have this thing about doctors. I see myself in them, something I could have been if I didn't have a brain tumor. When I feel talked down to, I resent them. I need to let go of that anger. I'm really depressed right now. I'm also dreading going into the EMU later this month. I want to do it but I'm so scared of seizing. It didn't always freak me out this much.

I'm going to Greek Orthodox Easter in Rochester this weekend, and then at the end of next week I'm going to Florida to visit my mom for a week. Maybe getting away from here, seeing mom, the sunshine, and swimming in the ocean will fix me up.
 
Sometimes I think that since epilepsy deals with your brain it means that you have severe brain damage and are unable to act like the average human being. By reading what some of the posts were and how they were worded it was as though they thought epilepsy and downs syndrome are the same thing. No offence to anyone who has downs syndrome.

If any one of us were to start talking to the people who posted on that website for about 15 minutes then told them we had epilepsy I'm sure they'd probably be surprised. We might hear something like "But your normal! You can't have epilepsy. Your not shaking or slurring your speech. You can hold on a conversation and know what you are talking about! You mean the lights in here don't make you have seizures?" and so on.....

People need to be taught more about epilepsy. When I was in school we were pretty much taught that a 'seizure' was a tonic clonic, where you shake, we didn't know there were any other types. You couldn't go anywhere near flashing lights and many of the other typical things related to epilepsy.

Even after I was diagnosed with epilepsy my family and I had to learn more about it. We had to find out what could cause me to have seizures. My family was scared to death to let me near flashing lights. There were even some tv shows that they didn't want me to watch because of the blinking on the screen. One day I somehow ended up around flashing lights and they were surprised, and glad, to find out that they didn't cause me to have seizures.

The more you learn the more you know!
 
I'm new to this forum. I found this thread very interesting and helpful. I have had some similar experiences. I also believe that when seizures require a trip to the ER or a hospital stay again; I feel very disagreeable. It's more an acting out of my frustration and disappointment. I have found that few people even know what epilepsy truly is or have some Hollywood version of it. Even my closest friends don't understand what a simple seizure (which is what my aura actually is), as compared to my complex partial or tonic clinic seizures.
 
There's a few rules I try to follow in my life since having a girl with special needs.

1. Never assume and judge anything and anyone.
2. Nothing is ever perfect, it may be superficially great but no one ever really has it "all"
3. Never be too hard on yourself because we are all learning in our lives .
4. Educate the ignorant if they are willing to understand.
5. Treat others as to how you want to be treated.
 
I also believe that when seizures require a trip to the ER or a hospital stay again; I feel very disagreeable. It's more an acting out of my frustration and disappointment.

Maybe I feel a lot of that. I don't think about it that way, but it makes sense. I was pretty young when diagnosed, and don't remember parts of it very well. Because my dad had a chronic condition and I thought it was part of growing up, and also because I'm a bit of a romantic, I accepted it right away. I would be shocked if I ever cried about it. I'm not sure I ever asked, "Why me?" I decided that I wouldn't spend time thinking about it, and wouldn't think of myself as different, beause I was still the same as I was. Most of the frustration came later, not until college. Now I'm so frustrated its not worth getting upset about! No, that's might be wrong, as a child I didn't think I was frustrated, but I certainly acted like it, but I always thought it was the meds or seizures. My mom wrote something like, "He seems so frustrated all the time." I get really down on myself for feeling that way.
 
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