Epilepsy Talk
A neurologist talks about his own epilepsy… | November 27, 2022
In this eye-opening article from the New York Times, a neurologist talks about his own journey with epilepsy: his perceptions, other people’s reactions (not good) and how he decided to become a neurologist.
A wonderful account of the doctor as patient and “must” reading for anyone who has epilepsy…
http://well.blogs.nytimes.com/2011/06/23/seeing-epilepsy-from-the-patients-point-of-view/?emc=eta1
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Posted in Epilepsy
Tags: "must" reading, eye-opening, Neurologist, perceptions, reactions, reality, stereotypes, stigma
Tags: "must" reading, eye-opening, Neurologist, perceptions, reactions, reality, stereotypes, stigma
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Epilepsy Talk 
This article deserves to be read by as many people as possible. The stigma, even reaching its tentacles into the medical profession, is real, not just in the minds of people with epilepsy (as some researchers ask you to think). That said, I wish the article were more recent. It is from 2011. The false claim that instances of stigma have entirely been eliminated in First World countries in the last 11 years can all too conveniently be made.
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Comment by Alison Zetterquist — November 27, 2022 @ 10:52 AM
Interestingly enough, this statement was made in 2010: Stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances. The most significant problems people with epilepsy encounter in daily life often are not related to the severity of the condition, but stem from concepts of epilepsy held by the general public. https://www.sciencedirect.com/science/article/pii/S1059131110002487
Yet, this was written by WHO in 2022:
Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries. This stigma continues in many countries … https://www.who.int/news-room/fact-sheets/detail/epilepsy
Etc.
Your point is well taken.
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Comment by Phylis Feiner Johnson — November 27, 2022 @ 11:42 AM
Thank you , Phylis. I so appreciate your thorough answer with links to other sources. I’m deep into the lay epilepsy world, and the literature you point me to helps me make the point about the external forces of stigma. All the best to you, Alison
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Comment by Alison Zetterquist — November 27, 2022 @ 1:19 PM
Thank you for this. I also want to thank you for (several years ago) making me aware of “Danny Did Foundation”. They helped me get a seizure alert for my adult son with epilepsy. I can’t thank you enough.
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Comment by Ann Supplee — November 27, 2022 @ 12:12 PM
Wouldn’t be like a dream IF all neurologists would just try 1 time to understand US like this Dr. Smith seems to do by this article? When the line is drawn however, WHAT SIDE would Dr. Smith be on and Would he have the backs of every single person living with epilepsy? 62 years of my own experiences could easily qualify me to be a neurologist assistant to be an advocate & DA Doctors Assistant to help that neurologist to UNDERSTAND what any patient with seizures in their life goes through. As I have been over 1 year now without a seizure, I am STILL ON ALERT knowing how drugs 1 day can decide I QUIT & stop controlling brain chemistry & seizure activity comes back. So far EXCOPRI is still working for me after being on it now for 1 full year.
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Comment by James D — November 27, 2022 @ 1:52 PM
Phyllis,
Thank you for sharing that article with us. I am astounded that he had his left Temoral Lobe removed yet can still be a doctor! And I am also surprised (with slight negativity – I can’t think of the right word), that SO many doctors don’t seem to understand this disorder. We have a different perspective.
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Comment by leonchavarria — November 29, 2022 @ 3:32 PM
You know what they say: “Don’t try to understand me, until you’ve walked a mile in my shoes.”
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Comment by Phylis Feiner Johnson — November 29, 2022 @ 3:46 PM