As I embark on this journey with epilepsy and interacting with more people in the epilepsy/seizure community I’ve encountered many different views. Although I’ve learned a great deal that’s positive, I’ve also discovered dissention which troubles me.
Let’s face it, some people love to nitpick. They seem to be argumentative by their very nature. Others may lack knowledge on a particular subject and form opinions based on that limited knowledge. Then there are some who don’t seek out information independently of what their doctors say, trusting their doctor knows best.
What troubles me in particular is a certain amount of nitpicking when it comes to the very basic terminology used for epilepsy. I’ve seen fights erupt within the epilepsy community over a simple word or turn of phrase.
Let’s start with the very definition of epilepsy as defined by the Epilepsy Foundation: “When a person has two or more unprovoked seizures, they are considered to have epilepsy.”
That seems pretty straight forward, right?
Yet, that being said, many people with reoccurring unprovoked seizures will argue that they do not have “epilepsy,” they have “a seizure disorder.” (They tend to say things like, “Oh I don’t have epilepsy, I have a seizure disorder due to a brain injury” or something similar.)
I’m not totally sure why the word “epilepsy” is such a bone of contention. Perhaps, because their doctor/neurologist used the words “seizure disorder” they believe it means they don’t have epilepsy? Maybe they are scared of the word “epilepsy” and fear what others may think if that term is used? Maybe a combination of reasons? I’m not sure, but it frustrates me nonetheless.
Next comes the debate is epilepsy a “disorder” or a “disease?”
In researching epilepsy for my own purposes I’ve read many neurological articles which refer to epilepsy as both a disorder and as a disease. I can accept either opinion, though personally I tend to lean to the disease terminology.
An argument was recently made by someone who was offended to be told epilepsy is a disease was that epilepsy is not contagious therefore it can not be considered a disease.
That is not firm ground on which to build an argument. Why? Because it is a basic fact that not all diseases are contagious. I can name a long list of recognized diseases which are not contagious, but lets start with the basics of defining a disease.
From the free dictionary: “disease /dis·ease/ (dĭ-zēz´) any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.”
A really good argument for why epilepsy can be considered to be a disease can be found here: EPILEPSY IS A DISEASE (NOT A DISORDER) - ONE INDIVIDUAL'S PERSPECTIVE
Another touchy subject I stumbled into deals with the very defining semantics of epilepsy. If you have epilepsy are you “a person living with epilepsy,” or “epileptic?” Never in my wildest dreams did I imagine referring to myself as epileptic would be such an earth shattering, offensive thing to many people! I just want to say, “Really?”
We have become such a “politically correct” culture that we’ve begun redefining medical terminology to make things sound less “offensive” in the opinions of some. Not all the newer definitions are a bad thing, however changing “epileptic” to “living with epilepsy” seems utterly ridiculous to me.
For example, when someone has blood glucose issues what are they called? Diabetic. Yep, someone living with diabetes is called a diabetic. Someone living with blood clotting issues is called a hemophiliac because they live with the bleeding disorder hemophilia. So then why is is such a huge issue to use the term epileptic for someone living with epilepsy?
I think the bottom line is simple. Public perception, negative stigmas and myths that even today still plague people diagnosed with epilepsy. Rather than putting ourselves out there publicly and educating our friends, families, co-workers etc. many choose to hide our disorder/disease away and/or change the terminology. What’s wrong with this picture?
We are giving far too much negative power to these words. Whether it’s due to our own personal fears or because our doctors/neurologists are not well educated in the subject, we are as much to blame for continuing the negative stereotypes, myths and stigmas. We as a community should be learning and then educating others rather than redefining existing terminology.
Who out there knows the Harry Potter series (books or movies)? Remember Lord Voldemort? No one dared speak his name and he was referred to as “he who shall not be named.” His name was given power simply due to the fear his name invoked.
I think it’s much the same in the epilepsy community. The words epilepsy, epileptic, disease… they carry a burden of fear for many people. Not just those diagnosed with it but also friends, family and people who have little knowledge about it. But as they say, “Knowledge is power.”
In my opinion we need to stop allowing the negative connotations to spread and start educating and speaking the truth about epilepsy. Stop being afraid and find our inner strength to not only educate others, but to first educate ourselves. Don’t be afraid to question our neurologists, after all they work for us and they can be fallible.
With epilepsy being so prevalent (approximately 1 in 100 people diagnosed) we need to stand together as a community and stop nitpicking over semantics.
Just one epileptic’s opinion.
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