By Elizabeth Shimer Bowers | Medically reviewed by Lindsey Marcellin, MD, MPH
Misinformation and epilepsy stereotypes often prevent people with this seizure disorder from getting needed care. Advice from people who have overcome epilepsy stigma can help.
For many years, Tiffany Manning had no friends. Manning, who’s 30 and lives in Modesto, Calif., 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,” Manning says. Today, although Manning says she still deals with epilepsy stigma, she has learned to deal with the stereotypes associated with the disorder, mainly by volunteering for the Epilepsy Foundation.
Bryan Farley, 43, a professional photographer and journalist who lives in Oakland, Calif., says he ofte
n feels invisible because of his epilepsy. “When people learn I have epilepsy, they put me into a different category – I am seen as less,” he says. “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.”
Manning and Farley 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.
Fast-forward to modern times. A recent study published in Epilepsy and Behavior revealed the level of epilepsy stigmatization in social media. Study authors from Dalhousie University in Canada found that of 10,662 Twitter tweets containing the word “seizure” collected during a single week in April 2011, 41 percent were considered to be derogatory in nature. “Because of past negative ideas about epilepsy, the disease continues to maintain certain false negative connotations,” Patternak says.
Alan Haltiner, MD, a neuropsychologist who works with epilepsy patients at Swedish Medical Center in Seattle, says that 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,” he says. “Epilepsy doesn’t have a spokesperson out there who is normal in all other respects, like Parkinson’s disease has Michael J. Fox.” Yet epilepsy affects more Americans than Parkinson’s disease, multiple sclerosis, and Lou Gehrig’s disease combined.
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. “Patients may feel it is ‘just a fainting spell,’ and I have seen children misdiagnosed with ADHD when they are actually having seizures,” Patternak says. “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.”
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,” Patternak 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,” Patternak says. “Another obstacle, especially in rural areas, is lack of access to comprehensive epilepsy centers.”
Manning says the epilepsy stereotypes she’s faced over the years because of her condition have impacted her quite a bit. “To be honest, I can be really insecure around people until I get to know them better,” she says.
Epilepsy Stereotypes Debunked
“The most prominent epilepsy stereotype is that epilepsy is a mental illness,” Patternak says. “In actuality, individuals with epilepsy do not have a mental illness derived from their seizure disorder. However, people with epilepsy are at higher risk for depression, anxiety, and illnesses pertaining to low self-esteem.”
Other epilepsy stereotypes include the following:
Epilepsy stigma: Epilepsy is associated with neurological disabilities, such as developmental delay.
Epilepsy truth: “The majority of people who have seizure disorders do not have neurological disabilities,” Dr. Haltiner says.
Epilepsy stigma: People with epilepsy are violent.
Epilepsy truth: “During a seizure, a person may appear frightened, confused, angry, or combative, but violent behaviors are not associated with epilepsy,” Patternak says.
Epilepsy stigma: People with epilepsy cannot hold a job.
Epilepsy truth: “Although some individuals may have restrictions – such as driving, lifting heavy objects, or climbing ladders – many people with epilepsy are able to successfully work,” Patternak says.
Epilepsy stigma: Epilepsy is contagious.
Epilepsy truth: Epilepsy is not contagious. In some cases, it results from a medical condition or injury to the brain. In other cases, the cause is unknown.
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 Foundation or a similar organization or support group, because it is always helpful to get advice from people who have dealt with epilepsy stigma issues personally,” Haltiner says.
Manning is a perfect example of the positive impact that membership in such an organization can have. “When I became a volunteer with the Epilepsy Foundation of Northern California, I took the first step in living my life since my diagnosis 11 years before,” she says. “It has been such a rewarding experience.”
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,” Patternak says. “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.”
And both Farley and Manning advise people with epilepsy to not let the condition control their lives. “For a long time, I tried to hide my epilepsy,” Farley says. “Now that I have two children, I want them to know their father accepts himself.” And as Manning adds, “Don’t miss out on life you could have lived and will never be able to get back because of epilepsy.”