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Nervous System Mysteries: The Social Stigma Surrounding Epilepsy

Epilepsy, a chronic neurological disorder characterized by sudden seizures, has mystified both patients and researchers alike for years with its baffling neuronal mechanisms and unpredictable nature.

Each year, about 200,000 new cases of epilepsy are diagnosed—just as many as breast cancer.

Of these 200,000 cases, 70% have no apparent cause [1].

Looking at these statistics, it is not surprising that the phenomenon of epilepsy and the treatment of its patients demand such attention in the scientific community. However, the issue is still overlooked, and research remains largely underfunded at about $35 a patient compared to other neurological disorders, such as the $280 amount for multiple sclerosis [2]. Although studies have been conducted to unveil the true nature of this impulsive disorder, specialists are still very much in the dark when it comes to clearly elucidating why epileptic patients face the alarming syndromes they do.

And along with the slow rate of development of epileptic research, victims of this ailment remain as ostracized from society as they did ten, twenty, even thirty years ago.

Commonly referred to as a “storm in the brain,” epilepsy is so frightening because of its unpredictable nature and the patient’s complete loss of self-control [2]. The repeated seizures that burden the lives of epileptic patients are episodes of abnormal neuronal activity, caused primarily by excessive electrochemical signals in the brain.

When these unprovoked electrical impulses take place, patients lose complete control of their mental and physical functions.  This sudden response can be characterized by a wide range of symptoms, from blank stares and small jerking movements to uncontrollable convulsions and loss of consciousness.

Imagine your average child: innocent, naïve, sitting at a desk in a second-grade classroom. All of a sudden, he is on the ground, his body writhing wildly on the floor, froth bubbling at the corners of his mouth. The frustration that neurologists face in battling epilepsy is truly insignificant in comparison to the immense toll that this ailment takes on its victims and their families.

Epilepsy presents its patients with psychological and social challenges, and the stigma that is automatically attributed to them because of this disorder is in no way easy to deal with.

An Identity Crisis

Because the brain is such a vital part of the human body, one major challenge for epileptic patients is definitely coming to terms with the fact that their brains work differently. Patients have a deeply altered perception of themselves and struggle with accepting their condition, especially in relation to everyone else around them [3]. As Michael D. Hills from the Department of Psychology at the University of Waikato puts it, epileptic individuals face a sort of identity crisis — the traumatic question of “Who am I?”

In addition, epilepsy is often known as an “invisible” disease, because the seizures are so sudden and have no apparent cause. As a result, a fear of the unknown develops in the epileptic individual, as they never know when a seizure will strike [3]. Apprehension, anxiety, and constant depression are unavoidable as they struggle with the sudden nature of the disease and consequently often deny that they have such an illness. Hills states that this denial leads to “concealment” and patients’ refusal for both treatment and support.

Ultimately, epileptic patients feel that they are already so alienated from others because their brains function differently, and the sudden nature of this disease only leads them to isolate themselves even more. Victims plunge themselves into a world of loneliness as they struggle to come to terms with a disease that attacks without warning and accept themselves as different [3].

Social Discrimination

Humans have an inherent habit of distinguishing and labeling differences amongst themselves, and this automatic categorization alienates epileptic patients to the point where they face extreme discrimination. In a society so heavily plagued by predetermined views and quick judgment, epileptic patients are often singled out to be “abnormal” and are not guaranteed various fundamental rights [4].

For instance, laws in the United States and Great Britain that prohibited epileptic patients to marry were repealed only in the late 1980s and early 1990s. Until the late 1970s, legislations in the United States also prevented epileptic patients from entering public buildings such as restaurants, shopping centers, and theaters [US Department of Health]. Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.

And the statistics show.

A few years back, a survey in China showed that 31% of the participants believed that epileptic patients should remain unemployed [US Department of Health]. And in developed countries such as Great Britain, about 50% of epileptic victims remain unemployed while the numbers climb to 100% in many developing countries. Prejudice is still very much present in today’s society, and this discrimination only further contributes to the already difficult internal struggle that epileptic patients go through to accept themselves.

 

 

 

 

 

The Solution

The fundamental problem is that even though epilepsy has been around for decades, the level of awareness of the disorder is astonishingly low. And this is ultimately the root cause for the detrimental social effects that epileptic patients face.

Epilepsy is a relatively new disorder, and because it does not receive much attention or funding, a large fraction of modern day societies are not even aware that such an ailment exists due to specific scientific reasons. Because communities have not been educated about the causes and effects of epilepsy, let alone the presence of such a disorder, individuals who suffer from periodic seizures are designated to be abnormal.

The good part is, there is an easy fix for this: raise awareness.

Epilepsy should be just as well known as breast cancer, AIDS, multiple sclerosis, and any major disease, because epileptic patients go through just as much as those of any other illness. Victims of epilepsy cannot be neglected simply due to the fact that they have, by chance, been born with a disorder that is relatively new. Awareness needs to be raised, and communities need to be educated. This requires more support groups, more fundraising, better treatment programs, and funding for epileptic research. Action needs to be taken urgently. Only then will justice be served to the courageous patients who live with this disease.

A Perpetual but Quiet Danger

The alarming nature of epilepsy and its symptoms urgently calls for attention. As Pulitzer prize-winning author Jon Meacham states, “Most people with epilepsy are not in a constant state of seizure – they are, rather, in perpetual but quiet danger.”

The battle will truly be won not only when societies all over the world acknowledge and understand the challenges posed by epilepsy, but when epileptic patients no longer need to bear the social stigma of their disability. Epilepsy needs to be widely acknowledged and epileptic research needs to be funded, for this disease is too dangerous and too widespread to be ignored any longer. Epileptic patients need to be supported and understood, just as much as patients of any other neurological disorder.

For in the end, we are all human.

References:

1 Epilepsy Foundation of America [Internet]. [Place unknown] Epilepsy and Seizure Statistics [cited 2010 November 14]. Available from http://www.epilepsyfoundation.org/‌about/‌statistics.cfm.

2 Meacham, J., The Mystery of Epilepsy. Newsweek, 38-41, 2009 April 20 [cited 2010 November 14]

3 Hills MD., The Psychological and Social Impact of Epilepsy, Department of Psychology, University of Waikato, Hamilton, New Zealand, 2007 [cited 2010 November 14].

4 Leppik, I., Kelly, K., DeLorenzo, R., Mathern, G., White, H., Patrylo, P., & DeToledo-Morrell, L. Basic Research in Epilepsy and Aging. Epilepsy Research, S21-S372005 December 27 [cited 2010 November 14] Available from http://www.sciencedirect.com/‌science?_ob=ArticleURL&_udi=B6T34-4HWXP261&_user=5215657&_coverDate=01%2F31%2F2006&_alid=1503937194&_rdoc=2&_fmt=high&_orig=search_origin=search&_zone=rslt_list_item&_cdi=4936&_sort=r&_st=13&_docanchor=&view=c&_ct=11991&_acct=C000065845&_version=1&_urlVersion=0&_userid=5215657&md5=396c5f2c2bd818b33a39e5dde188332b&searchtype=a.

Paulomi Bhattacharya is a sophomore at the Harker School in California

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  • I referenced your article on my site. I can feel your passion, and it is appreciated. The stigma and blindness is fought for us daily, as well as the walking on eggshells in the “quiet, perpetual danger”. Fantastic!

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  • This is one of the best articles that I have read on Epilepsy and how it is still misunderstood today. Two aspects that need to be included are how people treat someone with epilepsy before they know you have epilepsy versus after they find out! The second aspect is the interictal period (time between seizures) and how epilepsy can almost control your life 24/7! One additional point is the potential side effects of medication. Hell can’t be much worse than 3-4 anti-seizure medications! I have personal experience; 2 successful brain surgeries and the influence of 7 different medications. I am no longer on any medication.Thank You Heavenly Father!!

  • Hi, I think this is the best information I have read on Epilepsy ever. My husband has epilepsy and I have lived with him for 25 years through the good times and the bad. I have written a book on how living with someone who has epilepsy has effected me. How I went through fear and anxiety and I learned to overcome these problems and want to let others in my similar situation know that there is light at the end of the tunnel. No one ever mentions the carers. They have to live a hard life also. I hope someone can help me to get this information out to the world and help others who are desperate to know how to move forward.

  • Kathir Sundarraj

    Being a Harker student, and a person who suffers from epilepsy as well, I can tell you that this is a fantastic article. If you really want to contribute…http://www.cureepilepsy.org/home.asp. Its a fantastic organization. Again, thanks for writing this article Paulomi, its really great

    -Kathir

  • Rebecca

    Thank you for this great article! There should be more general awareness about epilepsy. As a NZer, I can only encourage you to pass this article along, and visit http://www.epilepsy.org.nz or their Facebook Page: http://www.facebook.com/pages/Epilepsy-New-Zealand/145939448774585

  • EFWP.org

    EXCELLENT ARTICLE! Everything you say is spot on and I can only encourage raising awareness for epilepsy. Keep up your fantastic work!

  • lauren

    great information i have epilepsy and this artical says alot about it!

  • Richard Alexandar

    No, epilepsy is not a new disorder. Yet, despite this falshood, and the outdated terminology, this is still a great read.

  • frank

    my son was just diagnosed with epilepsy at 14 moths old, he’s had 25 -30 of them since 4 1/2 months old…any advice for 2 loving parents would be great….this boy is the the best thing that has ever happened to us and we will do anything to give him the best life…

  • My daughter died from a seizure and no one in the medical community (all of her Doctors) ever told us that a seizure could and does kill.

  • dave keays

    Thank you for this page but I have a couple of comments. I am convinced the ignorance will remain as long as it is being hidden by my fellow epileptics and the science community. There still seems to be some shame left over from the days when a mental hospital was refered to as a “house of epileptics and feeble-minded”.

    First, thank you for properly citing the statistics so I can use myself. I am working on a book about neurology from the view of a patient
    and would appreciate your feedback. The book will be divided
    into 3 sections; a neurology primer for the layman (which will include the
    history of epilepsy and brain damage), how epilepsy affected my
    development as a person, and how I had to re-adjust my thinking to get
    back into society after having my brain “re-sectored” or re-wired with a
    surgeon’s knife. The preliminary title is “through the eye of a
    seizure”.

    Like another commenter I want to mention that epilepsy has been
    recognized as a disease for thousands of years, not decades. It is referenced by ancient Babylonian and Greek books, in most
    all main-stream religious scriptures, and is very important to a few religions.

    Finally, I would like to help you or any other group with a strong neurology oriented element with your Internet efforts. If you are not pleased with your WordPress site or
    the Internet host it is on I can help. I can administer the site, host
    the wordpress site on my servers, or develop another site in the more powerful Drupal on a pro-bono basis.

    I hope to hear from you soon.

  • we have found great support groups on facebook . .both of my sons have epilepsy

  • Purcy Purpleman

    There is over-whelming ignorance in the medical community. God bless y, Jackie Cassidy. I am sorry, saddened, and cry for you. Peace, Jackie Cassidy, peace.

  • ldsgirl

    I’m so sorry for your loss, Jackie. I, too, was unaware that a seizure could cause death. My youngest two sons saw me have a convulsion one time when they were young, and of course, it’s something I would not have told children, but would have shared with certain adults I trusted, had I known. Do you think the docs knew? I wonder…

  • Jodi
  • Doug3

    Is there any evidence that the social discrimination laws were enforced on people with Epilepsy on America?