Should I write an article about Living with Epilepsy?

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I'm considering writing an article about what it is like to live with Epilepsy. Part of me feels like it might not be a good idea to "out" myself considering we're living in an age of increasing discrimination. But the other part of me wants to do anything that could bring attention to this disorder to find a cure. My other motive is safety. At the end of the day, I can live with someone laughing at me. But I may not live through someone being ill prepared to act if they see me, or anyone else, having a seizure.

What's your opinion? We all live different lives, but their are definitely universal aspects to Epilepsy. :soap:
 
I've written a few articles on my blog about epilepsy. Surprisingly, they've gotten a positive response! I, too, had my doubts about doing this because it's a part of myself that sometimes I don't want to show. In the end however, it was a pretty therapeutic and it actually helped me cope with my inner demons.

I say go for it, even if you don't post it online.
 
Cuppycake.
Just go for it, if writing is a way for something that's positive for you. Don't let anyone put you down and don't be sensitive to ignorance.

We all have different journeys in life, and sometimes there's a glimmer of someone who is able to understand and relate a similar either through their writings or art etc is able to express their journey that mean something.

Knowledge is power.

We still need to educate about epilepsy, ignorance still exists in various ways.
Dignity
Hope
Opportunity
Love
all aims to defy the challenges of Epilepsy & other conditions.
 
I've written and presented on epilepsy, but it's in an academic arena so there is a very specific and narrow audience. My recent publication (in academia) is on stigma that graduate students face and how graduate students can (or cannot) disclose. However, I have also written on the history of epilepsy, which I really enjoy writing on. I've talked with neurologists and also patients about epilepsy, but again I tend to come at it from an ethos of not only being an epileptic, but also a scholar so I maintain a certain jargon when I talk.

I think first and foremost you should consider your audience. I tell my undergrads this. Who would you write this to you? Would you write this for a notable magazine, a distinguished journal, an online blog, etc.? Your audience determines the framework of the piece. If it will be published by the magazine Epilepsy, which is often seen by everyone from epileptics to caregivers to neurologists, you will want to be concise, but maintain a certain amount of pathos (the rhetoric of "overcoming," while problematic, is often popular). If you're writing for an online blog, you could take a different approach. The digital space really rose up in the 2000's (I believe?) against the militant cancer rhetoric of overcoming to say, "hey, this sucks and we hate it!" Digital spaces are powerful spaces to discuss medication, grief, resistance, etc. Consider a blog post about medication or diagnosis. If you're going with narrative, consider a thread or vein, which can bleed into each other. I think your audience would really enjoy that approach and it would highlight various things about epilepsy that "able-bodied" individuals don't generally think about like how difficult medications can be to take, to obtain, etc.

Lastly, disability studies scholar Simi Linton says in her book Claiming Disability that while passing (meaning not coming out) certainly holds its own anxieties, coming out likewise carries weight and apprehension that we sometimes don't think about. Coming out allows a person to forge boundaries and establish a location in a community, however coming out also requires a tremendous amount of responsibility and vulnerability. In Gender Trouble, Judith Butler says that when one comes out of the closet, it is a continuous becoming meaning every day, every moment one comes out. So, if we apply this to coming out as epileptic (or disabled or what have you), one then has to navigate this newly forged terrain that is newly "colonized," which that in itself is problematic. So! Passing or coming out is not a strict binary, rather it is contingent on spaces, a spectrum, and a literal becoming. I think you should do what is safest for you! If you're audience is the World Wide Web, consider writing on something less personal than your seizures-- perhaps you could write on medication, epilepsy and access to healthcare, lack of female neurologists, etc. This brings attention to the disorder itself, but it does not necessarily "out" you completely. It's a "becoming" so to speak. :)
 
All of you have given me a major boost for "ideas", as I myself have been in the same boat as Cuppycake.
These thoughts, ideas and ways of writing about our issues with Epilepsy and its many little details that seem to go along with it are great for sharing! I have just been needing that last bit of nudge to get me going! Thanks for this encouragement I just read over guy's!!!
Terri
 
Garbo, Thank You for such a thoughtful, well-articulated response. There is definitely a lot to ponder. I completely hid my diagnosis for nearly 20 years. More than anything else, I'm tired of hiding. But I am aware that I could easily regret sharing. It changes everything in terms of employment, dating and even some friendships.

I appreciate the suggestion regarding audience. Being "sick and tired" could easily translate into unfocused ranting.

Should I submit something I'll update you all on here. :)
 
go for it.. more that written the more that is understood...some of us unable to write stuff so it good when someone comes along that can
 
theres nothing wrong with you writing about it. if you write about your experiances it might help someone else
 
theres nothing wrong with you writing about it. if you write about your experiances it might help someone else
Very true. It also can be very helpful to you (the writer).
I find that if I can get my thoughts organized enough to write something down, I actually understand it better myself. Then I am better able to articulate what I am feeling and/or thinking to others.
 
If you want to write about an article living with epilepsy write it.
I had an article written about me living with epilepsy in the early 90's , in the EFA paper.
 
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