People with epilepsy are possessed and demonic: The misconceptions about epilepsy

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 is 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 faces epilepsy stigma, she has learned to deal with the stereotypes associated with the disorder.

Mercy represents many other people who often feel invisible because of epilepsy. Most people who are diagnosed with epilepsy say that they are afraid to talk about their condition because they will be seen as less. A member of the epilepsy support group says she has lost good jobs after having a seizure.

Mercy and Epilepsy care givers know firsthand the stigma that so many people with the condition face. “Some people still believe in misconceptions about epilepsy that date back hundreds of years. One misconception is that people with epilepsy are possessed and demonic. 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 is the people who have the most severe, poorly controlled epilepsy who define these epilepsy stereotypes because they more obviously represent the condition.

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 epileptologist Dr. Eddie Chengo.

"Unfortunately, individuals who reveal that they have epilepsy fear that when applying for a job they may get turned down,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 challenge, 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.” He adds.

Dr. Chenga advises 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 that their father accepts himself.

What is being done?

Epilepsy is among other conditions grouped as Non-Communicable diseases. While conditions like Cancer receive a fair share of awareness and concern, epilepsy has been sidelined. National Epilepsy Coordination Committee is an Umbrella body that brings together all stakeholders concerned with Epilepsy care in Kenya. However with time the body has not received enough support to carry out its mission.

Other organizations playing a major role in Addressing Epilepsy care in matters Awareness, proper medical care and research are Afya Research Africa and Foundation for People with Epilepsy based here in Kenya. Afya Research Africa has a wide network of medical centers across the country in marginalized areas. This has by far helped to bring Epilepsy care services closer to the people.

The national government on the other hand needs to look into the matter comprehensively, so that an equal share of concern is given in addressing this condition.