I have epilepsy and I’m one of many
By Princess Katana, director of multicultural affairs at the Epilepsy Foundation
Recently, Kara (name changed), a young Asian American woman living with epilepsy remarked, “I’m not an anomaly. I’m one of many.” It’s a phrase that I have heard often.
As the director of multicultural affairs for the Epilepsy Foundation, I have met many people who are living active, full lives with epilepsy. I feel proud that our outreach programs in communities across the country are raising awareness and promoting inclusion so that people living with epilepsy can thrive in their school, work, community and home environments. Unfortunately, however, I also recognize that there are people with epilepsy who feel isolated from their community or feel they are not able to get the support they need from family, friends and neighbors because of their epilepsy. This isolation often results from a lack of awareness or misconceptions about epilepsy that occur in many communities, including Asian American communities like Kara’s.
Diagnosed with epilepsy as a young child, Kara’s parents kept her condition secret not only from family and friends, but from Kara herself. Epilepsy was just something that wasn’t discussed in Kara’s home, school or community.
Her parents, who immigrated from Korea, provided the best care they could for Kara, but they often faced challenges — lack of basic information about epilepsy, difficulty accessing medical care that incorporated the best treatment options while addressing the family’s culture and views about epilepsy, very limited research on Asian Americans with epilepsy and nobody to talk to about how the condition impacted their lives. Kara’s parents believed that she would outgrow her epilepsy, believing it was “juvenile epilepsy.” They did not understand that even when Kara’s seizures were infrequent, she needed ongoing medical care and medication to manage her condition appropriately.
At the age of 18 — the onset of Kara’s first adult seizure — her parents were surprised to realize that her condition, while controllable, would not go away. Even more surprised was Kara herself, as this was the first time she realized she had epilepsy.
Living with epilepsy can be challenging, but nobody should face the challenges alone. Isolation is common in many minority communities, including Asian American communities, where it may be hard to obtain comprehensive care that supports partnerships among the person with epilepsy, his or her family and their service providers and difficult to find reliable information about epilepsy. Information that is available is often too clinical and does not truly “speak” to people with epilepsy and their families by addressing their unique approaches to living with the condition. Limited information about the condition available to minority groups, not having someone from their community to rely on, along with pervasive myths and stigmas about epilepsy may cause shame, fear and confusion that it make it hard to talk about it.
Kara’s parents withheld information about the condition from her and other family members because they didn’t know what caused it, how to treat it and what it meant for her future. They were understandably confused and a bit ashamed about having a daughter with epilepsy, because they didn’t understand the condition well enough. Still, Kara’s parents were steadfastly determined — like many other parents of a child with a chronic condition — that she participate fully in school, home and community life.
Thankfully, Kara has learned much about epilepsy. She talks about the condition with her family and has connected with others living with the condition about how to best manage her epilepsy and face the challenges of others’ misunderstanding of the condition. She gets the medical care that she needs and remains seizure free. Everyday more and more people from all walks of life are coming forward and talking about epilepsy, what it means to them and how they live full and productive lives with the condition. Barriers are being broken down as awareness is raised.
While her diagnosis of epilepsy as a young woman was certainly a shock, Kara’s epilepsy is well managed and life for her couldn’t be better. Now, she doesn’t really think about her epilepsy on a day-to-day basis. She has a great job, she is a new mom and she’s been seizure-free for more than 10 years. She’s more open with family and friends about her condition. She hopes people will become better informed about the condition, and most of all, will be supportive of those living with epilepsy, so that no one feels like they are alone.
This post is also available in: Chinese