The Challenges of Living with Epilepsy as a Teenager
Scott Perry, M.D., sighs and takes a deep breath when thinking about the teenagers with epilepsy he treats at Cook Children's Jane and John Justin Neurosciences Center.
"Older kids are the worst. They are invincible when they are teenagers and now we are telling them they're not," Dr. Perry said. "They are driving and now we are telling them they can't drive until they get their seizures under control. That's a big deal and hard for them to accept."
Living with epilepsy as a teenager presents unique challenges the caregiver. Their teenager is just starting to become independent and all the sudden their parents are watching them constantly and reminding them to take their medicines everyday. While their parents are just protecting their kids, the teenager feels like they’re being treated like a kid again.
In addition, as many as two-thirds of children with epilepsy have some type of measurable learning problem. Their seizures may cause short-term memory problems and anti-epileptic drugs may cause drowsiness, inattention, concentration difficulties and behavior changes which impact the ability to learn. These can present additional struggles making a diagnosis of epilepsy in adolescence life-changing.
Many teens talk about social isolation, stigma and fear because of their disorder.
In a survey of 20,000 teens:
- More than 50 percent had never heard or read about epilepsy.
- Thirty-seven percent said teens with epilepsy or more likely to get picked on.
- More than 50 percent said they would not, or were not sure, if they would date a person with epilepsy.
- Nineteen percent thought that epilepsy was a form of mental illness
- Fifty-two percent thought that people often die from seizures.
Social media has not helped with the stigmas young people with epilepsy face. It can reinforce the negative attitudes and misinformation about the disorder.
A survey of epilepsy related Twitter posts found that 41 percent were derogatory and one-third of YouTube videos labeled as seizures/epilepsy were definitely seizures, while the others were clearly nonepileptic or indeterminate events.
"People still think you can catch epilepsy," Dr. Perry said. "One in 26 people in the world could have epilepsy. So chances are there's a lot of people walking around you with epilepsy and you might not even know because they don't want to tell you because of all the stigmas. The only way to change that is to talk about it and raise awareness.”
Dr. Perry suggests parents take the time to talk to their children about epilepsy. Explain to them that children with epilepsy shouldn't be defined by their disease and should never be bullied.
Parents who have a child with epilepsy should talk to their caregivers and support groups such as the Epilepsy Foundation to educate the child's teachers and in the process the students at the school on what it means to live with epilepsy.
Get to know M. Scott Perry, M.D.
Dr. Perry joined the Neurosciences Program of Cook Children's in 2009 as a pediatricepileptologist, then served as the Medical Director of the Epilepsy Monitoring Unit and Tuberous Sclerosis Complex clinic before assuming the role of Medical Director of Neurology in 2016. His clinical and research interests focus on the treatment of childhood onset epilepsy, specifically those patients with uncontrolled epilepsy or those for which the cause has not been determined. Click here to learn more about the Jane and John Justin Neurosciences Center.