Why we should change the way we talk about epilepsy | Schwanna Jenkins | TEDxMallard Creek

Key Concepts

• Epilepsy as more than a medical condition
• Whole person advocacy
• The "in-between" times of seizures
• Connection between brain and mental/emotional health
• Shifting from a medical lens to a person-centered lens
• Hidden struggles: social withdrawal, isolation, anxiety, depression
• Public ignorance and stigma surrounding epilepsy
• Personal awakening and advocacy
• The role and resilience of caregivers
• Mental health outcomes predicting resilience
• The importance of therapy for individuals with epilepsy and their caregivers
• The interconnectedness of physical, mental, and social well-being
• Actionable ways to support individuals with epilepsy and their caregivers

Epilepsy: Beyond the Seizures

The speaker emphasizes that epilepsy is often perceived solely as a medical condition characterized by seizures, but this view is incomplete. The true challenge for individuals with epilepsy lies in the periods between seizures. These intervals are filled with anxiety, fear of recurrence, and the impact on daily life events such as social gatherings, important milestones like senior pictures or prom, and even public speaking engagements. This constant underlying fear significantly affects an individual's mental state and overall well-being.

The Interconnectedness of Brain and Well-being

While the heart and brain are not physically connected, the speaker highlights the profound impact of brain function on mental and emotional health. Epilepsy, being a neurological condition affecting the brain, consequently influences an individual's feelings, emotions, and their ability to navigate daily life, leading to either good or bad days. This underscores the need to consider epilepsy not just as a physical ailment but as something that deeply affects the person's entire being.

Shifting the Lens: From Medical Condition to Whole Person

The presentation advocates for a shift in perspective from viewing epilepsy as a mere medical diagnosis to understanding it as a condition experienced by a whole person. This involves recognizing the social withdrawal, anxiety, isolation, and depression that often accompany epilepsy, which are frequently overlooked. The common misconception of epilepsy, such as the myth of swallowing one's tongue, exemplifies public ignorance that contributes to stigma. The speaker urges for a "kaleidoscope view" that encompasses the individual's feelings, their coping mechanisms, and the challenges posed by medications, side effects, and other interventions.

The Unseen Struggles

Key points of what is often unseen with epilepsy include:

• Fear of rejection
• Lack of independence
• Isolation
• Depression
• The absence of a cure
• Public ignorance and misconceptions

A Personal Awakening: The Speaker's Journey

The speaker shares a deeply personal story about their three-year-old son's diagnosis of epilepsy on November 27, 2010, following a grand mal seizure. This experience marked a "personal awakening," shifting the focus from mere awareness to a profound understanding of the person behind the condition. The diagnosis, requiring two unprovoked seizures, left the speaker feeling helpless and constantly anxious about the unpredictability of future seizures. This led to an intense desire to educate themselves and advocate for their son and others with epilepsy. The speaker's son is now 18 and has undergone brain surgery, highlighting the ongoing journey and the need for continuous support.

The Role of Hidden Caregivers

The speaker emphasizes the crucial, often uncelebrated, role of "hidden caregivers." These individuals, including family members and friends, become educators, nurses, and doctors in their efforts to support loved ones with epilepsy. Their resilience is often overlooked, with people rarely inquiring about their well-being or the potential severe consequences of seizures on their loved ones, such as the need for a ventilator or permanent brain damage. The speaker stresses the importance of shifting the lens to acknowledge and support these caregivers.

Mental Health as a Predictor of Resilience

A significant argument presented is that mental health outcomes are stronger predictors of resilience than seizure frequency. This means that even with frequent seizures, an individual can lead a happier and more successful life if they feel supported and their mental health is intact. This underscores the necessity of integrating mental health support, such as therapy, for both individuals with epilepsy and their caregivers, to address issues like anxiety, social withdrawal, isolation, and PTSD stemming from the unpredictability of the condition.

Combating Stigma and Fostering Connection

The transcript highlights how stigma associated with epilepsy leads to discrimination, exclusion, and silence, compelling individuals to hide their condition. This is particularly impactful for young adults, where limitations like not being able to drive due to seizure-free requirements can hinder social connection and peer interaction. The fear of triggering seizures with flashing lights in movies, for instance, can lead to exclusion. The speaker argues that what individuals with epilepsy need most is connection, not concealment.

A New Lens: Physical, Mental, and Social Well-being

The proposed "new lens" for understanding and treating epilepsy involves a holistic approach that integrates physical, mental, and social well-being. This comprehensive perspective is crucial for individuals to successfully manage their seizures, navigate life around them, and overcome the fear of unpredictability. The speaker asserts that epilepsy is "everyone's issue," and all individuals have a responsibility to ensure that people with epilepsy and their caregivers are heard, seen, and understood.

Conclusion: Treating the Person, Not Just the Seizures

The core message is that focusing solely on treating seizures leads to missing the person. The speaker offers actionable advice for interaction:

• Instead of asking "What happened?" or "What's wrong with you?", ask "How are you feeling today?" or "What's going on with you?"
• For caregivers, the most impactful question is "How can I support you today?" This encourages asking rather than assuming and offers genuine assistance.

The speaker concludes by emphasizing that individuals with epilepsy are amazing people who "just happen to have epilepsy," and their caregivers are equally remarkable. The presentation aims to foster a deeper understanding and provide practical ways to offer support.