Matthew74
Stalwart
- Messages
- 597
- Reaction score
- 26
- Points
- 93
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.
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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