April 30, 2008

Frustration...

When is my best, good enough? I comply, I take the tests, the pills and the insults from the medical establishment, the public, even family...

It is difficult to express how long and deep frustration is when you live with E... Want information on E., go to the web and search for a non medical site about it. When you find one, see if they talk about daily living with E., or the emotional, psychological, sociological aspects of life with it. Most of them don't.

What you will find, in huge numbers, are sites that advertise drugs, talk more about tests and findings, doctors etc.---in other words, an entire medical cocoon to wrap up in! 

When you go to the doctor, how hard do you have to struggle to get information relevant to you? Besides generic advice on getting enough sleep, watching your diet and taking your medications regularly, what do they really tell you?

Epilepsy is frequently misrepresented. On television, when they want to show a person 
with E. seizing, often, the actor presents E. as something like a two-year-old throwing a tantrum on the floor---lots of flailing of arms and legs. 
Never accurate.

Lately, I have been hearing more and more comments related to E.---"he got so mad he looked like an epileptic lizard" and the like. Or, "you don't have to get all epileptic about it". This isn't sensitive and does not help any of us!
Ann Jacoby and Joan Austin have written:
For many people with epilepsy, the continuing social reality of their condition is as a stigma. Epilepsy stigma has three different levels; internalized, interpersonal, and institutional. While there have been documented improvements in public attitudes towards epilepsy, the remnants of "old" ideas about epilepsy continue to inform popular concepts resulting in a difficult social environment for those affected. The social and quality of life problems arising from a diagnosis of epilepsy can represent greater challenges than are warranted by its clinical severity. The relationship between stigma and
 impaired quality of life is well documented. Tackling the problem of stigma effectively requires that all three of different levels at which it operates are systematically addressed. (Ann Jacoby, Joan K. Austin (2007) Social stigma for adults and children with epilepsy, Epilepsia  48 (s9) , 6–9 doi:10.1111/j.1528 1167.2007.01391.x Epilepsia 48 (s9) , 6–9 doi:10.1111/j.1528-1167.2007.01391.x .)

What about people in general? How about elementary school? Ever been faced with the suggestion that your son or daughter cannot be accepted because the epilepsy might frighten others or be an insurance liability?

How about employment? Housing? Two terrific areas of concern, and both frequently make use of the "insurance liability" phrase as a means of denial... Some years back, I can recall being denied employment on the basis that I didn't drive---even though it was not a requirement of the job, it was the basis of my denial.  That same year, I applied for an apartment, and was told I didn't qualify because I had E., and because I "might turn violent" and wreck the place. 

What am I expecting to find, since I have come out as epileptic? 

Equality, acceptance, and opportunity.  

4 comments:

rachelcreative said...

Paula - Thanks for increasing my own understanding.

And by the way thanks for your comment on my blog.

angryyoungwoman said...

I've been looking for another blogger with epilepsy--I'm glad I've found you. I have to agree that the seizures can be a handful--I haven't been able to get non-HUD housing for years. I was kicked out of my last apartment because my roomates were so scared by my seizures (and the post-ictal period afterward) that they mistook it for genuine psychosis. It's sad, but it's life--and life is way better than the alternative. Hang in there.

Chris said...

Although epilepsy has no real connection with my life, I fully empathise with your desire to move away from the medical hermeneutic which causes doctors, trained in a particular belief system, to force impressions of sickness upon the world.

When we cease to see the diversity of our mental landscapes as sickness, our whole society will benefit.

Best wishes, and good luck!

Mark and Linda Shattuck said...

Thank you a million times over. I really appreciate your beautiful understanding of Epilepsy. It's interesting to note that people either ignore or fear me. Then also equate epilepsy with eccentricity, and ecclectic values. I call it the E-bomb. Trying to find a job has been very difficult. Thanks for giving me the peace I needed on this very difficult day.