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Medical terms used with our neurologist? Terminology . . . again?

Tue, 10/02/2007 - 01:48
I don't know if you all remember what happened to me in the past. I had a big discussion with the 'President' of the epilepsy group/s here in Victoria (Australia). I was glad to be on the Epilepsy Chat-line and I had plan to go to the Epilepsy Social Group/s activities and outings too. But David, the president of such group, gave me a hard time. He drew my attention to my 'wording'. He told me to use the correct terminology when I was talking about epilepsy. I couldn't say 'I have epilepsy' but I should have said 'I am a person who has epilepsy'. I went on with this discussion via email until he told me that I am likely to start a World War 3 if I tell the members of the group that they are epileptic. I have participated to a couple of entertainment with the group, but then I stopped to go because David frequently stopped my conversation with others from the group, telling me to use the correct wording or terminology. I stopped to go to the club because it didn't help me and it wasn't a pleasant place where to spend some time with others. Now, I have read Gina of the Community Forum here, who came up with the problem of describing our seizure to our neurologist/epileptologist. Now it seems that we all have to learn medical terms to describe our seizure to our doctor and other people. I was 19 when I had my first seizure and now I am 49, I underwent the surgery 7 years ago which didn't work, and I tried to learn more about epilepsy. I do have a concise medical dictionary but I don't think that we have to learn such terminology when we talk about our experience with epilepsy, with seizures. Many have memory difficulties, language problems, or 'can't come up with the right word'. And we know that these difficulties in coming up with words or having a poor memory may result from a direct disruption of the language zone. If we look at epileptic terminology then we can't say 'grand mal' or 'petit mal'. If we talk about terminology, there are 40+ different types of seizures. But basically seizures are divided into two main kinds: Generalized (whole brain) and Partial (part of the brain). Then there is 'Simple', 'Complex', 'Secondary Generalized'. Tonic-clonic: the generalized convulsive seizure (grand mal), and if we are talking about 'petit mal', technically it is called absence . . . and there is a long list of other types of seizures. If when we have a seizure and are not aware of what happens or how it happened, how are we supposed to know the right terminology to describe our seizures? I have an appointment with my epileptologist on the 25th of this month and I will ask him about this topic: when we talk about our seizure and we are not aware of what happened, do we really have to learn the terminology and use only medical words, treatments, techniques, or types of epilepsy, etc.? If we talk about stigma, I don't think that one must use terminology to describe epilepsy to people around us. We have to try to change other people's approaches and describe them the situation. We are not possessed by the devil, but we cannot use medical terms to describe our disorder to those people around us and to be accepted by them as we are. Epilepsy is a complex subject which raises several questions about how the brain works, and its links with emotions, thoughts, the memory and personality. But do we have to 'study' medical terms when we talk about epilepsy? If I will discuss this with my epileptologist (isn't this part of terminology??), I will tell you about it. I don't expect an answer of this situation. I just want you all to know my idea and concept about 'terminology'. Edy

Comments

Re: Medical terms used with our neurologist? Terminology . . . a

Submitted by bernardcwe on Tue, 2007-10-02 - 08:18
Sounds like David is the one who is sensitive to the word epileptic. Many people don't like using that word as a noun (it's OK to use it as an adjective) because they don't like to be labeled. It has to do with perceived stigmas and such. If your doctor is worth his/her fee, s/he should be asking you appropriate questions about your seizures to figure out what type they likely are (and do tests to help confirm what's happening in your head). I prefer to be as precise as possible with language when describing anything (including seizures), but I don't get bent out of shape when I'm in a conversation with others and they use euphamisms to describe things. If I don't understand what they mean, I can always ask them for a clarification. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Check out my chart of alternative epilepsy treatments.

Re: Re: Medical terms used with our neurologist? Terminology . .

Submitted by edy_telephone on Tue, 2007-10-02 - 20:52
Hi Bernard, I am of the same opinion as you are. But I came up with a wrong thought and suggestion. Yes, when I talk with my epileptologist, I always try to express myself as best I can using some medical terms. What I meant is that I don't think that it is necessary to use such a terminology with others especially with members of a group (from epilepsy club) who get together and exchange once's own opinion or to enjoy our chat. I will check out your chart soon. Edy

Re: Medical terms used with our neurologist? Terminology . . . a

Submitted by Gina Marie on Tue, 2007-10-02 - 12:15
Edy, I didn't mean to raise such an issue and I'm sorry if anyone read my post and came to the conclusion that we have to know correct terminology. I just find for me personally knowing the medical terminology is helpful, but that's just me, I was a medical secretary for ten years and between my seizures and my bipolar disorder medical terminology has become second nature. I'm constantly looking to name what's happening to me. But I certainly didn't mean that anyone else had to know or remember those terms, or to make them feel bad if they can't. If describing the seizures in everyday language works for a person and their doctor gets what they're talking about then that's what matters. I have a hard time describing mine aloud, mostly because I often have a hard time talking aloud these days, So if I can sum up a long explanation in one word, it's a relief to me. So no, I don't think we have to study the terminology. We always have the option of asking for clarification if our doctors use terms we don't understand. Again I'm sorry that this raised such an issue. And it's just my two cents, but it sounds like a huge case of denial for an epileptic support group to be unable to even hear that they might be epileptic, or to talk about it. Take care,

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