healer, educate thyself
Dec. 15th, 2006 01:28 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
brightrosefoxIn the epileptics commuity, a young woman was talking about her seizure experiences. She wanted to know if some of her seizures were temporal lobe seizures, and not just myoclonic like her doctors insisted. I commented and explained what my own seizures were like. She told me that she has had the exact same kind of seizures, but her neurologist has only diagnosed her with myoclonic. She would tell her neurologist about episodes in which she would freeze and become trapped in her body but still be able to hear and see and be aware of her surroundings -- pretty much like this type that I often experience. And you know what her neurologist told her? That it was not a seizure, it couldn't be a seizure, because "she was able to hear what was going on around her."
Because she was still relatively conscious and aware.
Gods forbid.
And at that point, in the back of my brain, I quietly lost it.
I am sick, sick, sick and tired of doctors and neurologists insisting on exactly how an epileptic seizure must be. Yes, there are some specific symptoms and indications, so they can rule out other disorders. But to say that "this is not a seizure because you were conscious" is so much fucking bullshit. I told the person that she either needed to educate her doctor or find a new one. Obviously this doctor doesn't have a clue. It is dangerous for her. She doesn't often remember what happens. And you say she's not having seizures? Where the bloody fuck do you come off? How dare you? Are you saying that every single epileptic who remains awake and aware during a complex partial seizure is not having a seizure? What about those of us who remember? How about the few who even stay aware during, and remember having, a fucking tonic clonic seizure for gods' sake??
Sorry, assholes, but some of us just don't conform to your narrow way of thinking. You are doctors. You learn stuff every day that you didn't know about before. Shit happens that hasn't been taught in your medical classes and textbooks. If someone comes to you experiencing symptoms of severe bipolar disorder, but they aren't typical and exact according to your precious textbooks, do you just diagnose them with mild depression and mood swings, throw some bottles of pills at them, and tell them to come back in three months? I bet you do. Do the research. Learn about your patients. And for heaven's sake, listen to them!
We know how we feel. You only know how we feel because we tell you.
Sorry. I had to get that out.
I'm done now.
I feel better.
Because she was still relatively conscious and aware.
Gods forbid.
And at that point, in the back of my brain, I quietly lost it.
I am sick, sick, sick and tired of doctors and neurologists insisting on exactly how an epileptic seizure must be. Yes, there are some specific symptoms and indications, so they can rule out other disorders. But to say that "this is not a seizure because you were conscious" is so much fucking bullshit. I told the person that she either needed to educate her doctor or find a new one. Obviously this doctor doesn't have a clue. It is dangerous for her. She doesn't often remember what happens. And you say she's not having seizures? Where the bloody fuck do you come off? How dare you? Are you saying that every single epileptic who remains awake and aware during a complex partial seizure is not having a seizure? What about those of us who remember? How about the few who even stay aware during, and remember having, a fucking tonic clonic seizure for gods' sake??
Sorry, assholes, but some of us just don't conform to your narrow way of thinking. You are doctors. You learn stuff every day that you didn't know about before. Shit happens that hasn't been taught in your medical classes and textbooks. If someone comes to you experiencing symptoms of severe bipolar disorder, but they aren't typical and exact according to your precious textbooks, do you just diagnose them with mild depression and mood swings, throw some bottles of pills at them, and tell them to come back in three months? I bet you do. Do the research. Learn about your patients. And for heaven's sake, listen to them!
We know how we feel. You only know how we feel because we tell you.
Sorry. I had to get that out.
I'm done now.
I feel better.
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no subject
Date: 2006-12-16 05:56 am (UTC)I'm thankful that I have the education to be able to inform myself and know what's really going on. I really feel for people who haven't had the same opportunity (and no access to decent information).
no subject
Date: 2006-12-17 05:09 am (UTC)