Overcoming the Stigma of Epilepsy

By: Fredrick Beuchi Mboya (Epilepsy Activist)

Misinformation and epilepsy stereotypes often prevent people with this seizure disorder from getting needed care. For a couple of years Mercy Kwekwe had no hope of joining friends in school.

Mercy who’s 11 and lives in Mazeras, Kwale County has epilepsy, and when people found out about her condition, they would immediately avoid her. "So I didn't tell people for a long time," a family member says. Today, although she still deals with epilepsy stigma, she has learned to deal with the stereotypes associated with the disorder.

Mercy represents many other people who often feel invisible because their epilepsy condition. "When people learn I have epilepsy, they put me into a different category - I am seen as less," "When I was in high school, counselors stopped pushing college, even though I was highly qualified. And I have lost good jobs after having a seizure" says one member of an epilepsy support group.

Mercy and Epilepsy care givers know firsthand the epilepsy stigmas so many people with the condition face - misconceptions that date back hundreds of years. "People with epilepsy were once considered to be possessed and demonic, and in the 18th and early 19th centuries they were labeled as insane and locked in asylums," says Diane Patternak, LICSW, a social worker at the Comprehensive Epilepsy Center at Hofstra Medical School in Manhasset, N.Y.

Because of past negative ideas about epilepsy, the disease continues to maintain certain false negative connotations. Epilepsy stereotypes exist because people with reasonably well-controlled epilepsy often don't talk about their seizure disorder or reveal it to their friends and co-workers out of fear of repercussions or epilepsy stigma. It's the people who have the most severe, poorly controlled epilepsy who define these epilepsy stereotypes because they more obviously represent the condition, Epilepsy doesn't have a spokesperson out there who is normal in all other respects.

The Dangers of Epilepsy Stigma
Because epilepsy stigma and stereotypes are so prevalent, some people misunderstand epilepsy and others with the condition hesitate to get help. "Others do not seek treatment because they are concerned epilepsy stigma could harm their prospects with potential employers and affect their relationships with friends, co-workers, and romantic partners." says Dr. Eddie Chengo.
Such fears may be warranted. "Unfortunately, individuals who divulge they have epilepsy when applying for a job may get turned down (even though this is considered discrimination), and others who are employed are sometimes falsely viewed as inadequate for their positions," Chengo says.
There is also a lack of education about epilepsy within the medical community. "Some individuals who seek medical advice will initially be seen by their primary care physician, who may have little experience with epilepsy," Chengo says. "Another obstacle, especially in rural areas, is lack of access to comprehensive epilepsy centers."
Coping With Epilepsy Stigma
One of the best things you can do to cope with the stigma is to have support from others who have the seizure disorder. "Try to get connected with your local chapter of the Epilepsy Support group or a similar organization, because it is always helpful to get advice from people who have dealt with epilepsy stigma issues personally," Chengo says.
Having had an opportunity to initiate a couple of Epilepsy support groups as an Epilepsy activist, it has been such a rewarding experience and a perfect example of the positive impact. Take it upon yourself to educate others and increase awareness about the condition to debunk epilepsy stereotypes. "This is the most important way to change the stigma associated with epilepsy, "Schools, organizations, medical professionals, police, and the general public need to be better educated on epilepsy. You can contact your local chapter of the Epilepsy Foundation to find out what education programs they offer."
I advise people with epilepsy to not let the condition control their lives. "For a long time, I tried to hide my epilepsy," says a parent with epilepsy. "Now that I have two children, I want them to know their father accepts himself." And Sam Kiwinda adds, "Don't miss out on life you could have lived and will never be able to get back because of epilepsy."