November marks Epilepsy Awareness Month, a time dedicated to raising awareness, breaking down misconceptions, and encouraging understanding about a condition that affects millions worldwide. Epilepsy is a neurological condition that involves recurrent and unprovoked seizures and can be different in each individual. Although epilepsy is common, it is still one of the most poorly understood conditions, which is associated with myths and stigmatization.
For me, this month holds particular significance as I continue to live with epilepsy myself. This journey isn’t just about managing seizures; it’s also about navigating life’s everyday moments with a condition that can feel unpredictable and isolating. Yet, sharing knowledge and promoting awareness makes a real difference—not only in supporting those with epilepsy but also in building a more compassionate and inclusive world.
Types of Seizures
It is also important to break down some of the myths that are associated with this condition. While each person’s experience is unique, here are a few of the most common types of seizures:
- Focal Onset Seizures: These begin in one particular location in the brain and are sometimes referred to as partial seizures. They can be classified into two main types:
- Focal Aware Seizures: These episodes occur in the presence of consciousness and the person loses control of their behavior. They may have some tingling or shaking or some other movement but will know what is happening.
- Focal Impaired Awareness Seizures: These seizures also originate from one area of the brain but can affect awareness. Sometimes the person may complain of headaches, dizziness, or even seem to be confused for a while or even lose consciousness briefly.
- Generalized Onset Seizures: These affect both sides of the brain from the start and can take many forms:
- Absence Seizures: Short unnoticed episodes when the person may look blank or as if they are lost in space. These are frequent in children and at times are confused with daydreaming.
- Tonic-Clonic Seizures: These are the most familiar, and can include both the tonic phase which includes muscle rigidity and the clonic phase which includes twitching. Tonic-clonic seizures are more conspicuous than the others and may sometimes call for some form of intervention.
- Myoclonic Seizures: These cause brief, sharp, involuntary movements or convulsions, commonly in the arms and shoulders. Although short, these movements can be very active and disruptive.
- Atonic Seizures: Also known as “drop seizures,” these lead to sudden muscle weakness which may lead to falls or even injuries. This is especially so because they are characterized by sudden onset and may therefore be difficult to manage in public places.
Learning about these common seizure types not only builds awareness but also fosters empathy for those who experience epilepsy. Epilepsy isn’t always dramatic or obvious, and the wide range of seizure types underscores the importance of understanding and acceptance.
Common Misconceptions about Epilepsy
Still, there are a lot of misconceptions about epilepsy, and it is quite a widespread disease. These myths can result to misunderstanding and stigma hence making it harder for people with epilepsy to feel supported. Here are a few of the most persistent misconceptions
- Myth: All Seizures Involve Convulsions
Many people think all seizures are dramatic, with convulsions and loss of consciousness. In reality, some seizures are so subtle they might go unnoticed, such as absence seizures, which look like someone is simply zoning out. - Myth: Epilepsy Is Contagious or a Mental Health Condition
Epilepsy is a neurological disorder, meaning it affects the brain’s electrical activity, not one’s mental state or personality. It’s neither contagious nor indicative of mental illness, although dealing with epilepsy can sometimes impact mental health. - Myth: People with Epilepsy Cannot Live Full Lives
With the right treatment and support, people with epilepsy can and do live full lives. Many are successful in their careers, sports, relationships, and other areas. However, some may face limitations based on their seizure frequency or type, and creating a supportive environment is key. - Myth: People with Epilepsy Are Limited to Certain Activities
While safety precautions are necessary, especially for certain activities like swimming or driving, most people with epilepsy can still participate in a wide range of activities. Adaptations and planning allow for a fulfilling lifestyle without excessive restriction.
Raising awareness of these misconceptions helps break down the stigma and build a society that’s better equipped to support individuals with epilepsy. The truth is that living with epilepsy can be challenging, but it doesn’t have to define every aspect of life.
Living with Epilepsy
Living with epilepsy is a journey filled with both challenges and resilience. Managing epilepsy goes beyond just handling seizures; it affects many areas of daily life, from work and relationships to simple routines. For many of us, including myself, it means balancing the unpredictability of seizures with the desire to live fully and freely.
One of the daily challenges is the impact of medications. While they help manage seizures, medications can sometimes bring side effects, like drowsiness or difficulty concentrating. For those of us who still experience seizures despite medication, it’s about finding ways to stay positive and prepared, which isn’t always easy.
Epilepsy also requires constant awareness and often a level of vulnerability with others. I sometimes find myself explaining the condition to friends, or strangers to ensure they understand what to do if I have a seizure. This openness can foster understanding but can also feel tiring, especially when faced with frequent misconceptions or stigma.
Social situations, work environments, and daily activities all come with unique considerations. For example, working in environments with flashing lights or unpredictable schedules might trigger seizures, requiring additional planning or adjustments. Despite these challenges, I continue to push forward and find support from loved ones, epilepsy advocacy groups, and the epilepsy community. Each day reminds me of the strength within our community, and each step forward is a testament to resilience.
Living with epilepsy means adapting, educating, and sometimes relying on the understanding of others. The hope is that through greater awareness and open conversations, we can create a world that’s safer, more inclusive, and more accepting for everyone with epilepsy.
The Mental Health Impact
Living with epilepsy doesn’t just affect physical health; it also has a significant impact on mental health. The challenges of dealing with an unpredictable condition can bring about feelings of anxiety, depression, and isolation. Navigating the balance between managing seizures and participating fully in life can sometimes feel overwhelming, and this emotional toll is often invisible to others.
Anxiety is common among people with epilepsy, as there’s always a level of uncertainty around when a seizure might happen, especially in public or high-stress situations. For some, the fear of having a seizure while out with friends, at work, or even alone can lead to avoidance, making everyday interactions feel daunting.
Depression is another frequent companion for many of us dealing with epilepsy. Experiencing seizures can sometimes create feelings of hopelessness, especially if seizures persist despite medication. The social stigma around epilepsy can also lead to isolation, making it harder to find support and understanding from others. For those of us living with this condition, depression isn’t necessarily caused by epilepsy itself, but rather the isolation, limitations, and misunderstandings that sometimes accompany it.
Self-esteem and identity can also take a hit. Living with epilepsy often requires adjustments, whether it’s in career goals, lifestyle choices, or even daily routines. These shifts can affect how we see ourselves and our abilities, sometimes leaving us feeling “different” or misunderstood.
While these mental health challenges are real, they don’t define the journey. Many people with epilepsy find resilience through counseling, community support, and learning self-care practices that help manage both physical and emotional well-being. Building connections with others who understand epilepsy, seeking professional mental health support, and advocating for awareness all help to reduce stigma and create safe spaces for discussing mental health openly.
Understanding that epilepsy affects mental health as well as physical health is crucial. It reminds us that true support isn’t just about seizure management; it’s about recognizing the full spectrum of challenges and being there in both visible and invisible ways.
How to Support Someone with Epilepsy
Support from family, friends, and even strangers can make a world of difference for someone with epilepsy. Knowing how to provide help during a seizure and in daily interactions can create a sense of safety, reduce stigma, and help those with epilepsy feel understood and valued. Here are a few ways anyone can offer meaningful support:
- Know What to Do During a Seizure
If someone has a seizure, staying calm is key. For most seizures, the best thing you can do is help keep the person safe. Move any objects out of the way, support their head if they fall, and time the seizure. Avoid putting anything in their mouth—a common myth—or holding them down. Once the seizure ends, stay with them, offer reassurance, and give them time to recover. If the seizure lasts longer than five minutes or involves an injury, calling for medical help is essential. - Offer Understanding, Not Judgment
It’s easy for people with epilepsy to feel self-conscious, especially after a visible seizure. A supportive approach—free from pity or judgment—helps enormously. Kindness, patience, and a willingness to learn go a long way in showing that you care and understand. - Support Mental Health and Well-Being
Mental health is just as important as physical health, especially for someone living with a condition like epilepsy. Encourage conversations about mental well-being, and let them know you’re there to listen. A simple, “How are you really doing?” can open doors to valuable support. - Be Mindful of Triggers
If you’re aware of certain triggers—such as flashing lights, lack of sleep, or high-stress situations—do what you can to help minimize them. While it’s not always possible to control every trigger, being considerate shows empathy and can help reduce unnecessary stress. - Advocate for Accessibility and Awareness
Raising epilepsy awareness in your community or workplace makes a lasting impact. Whether it’s learning about epilepsy on your own, encouraging others to understand it, or advocating for accessible environments, every small action helps make society more inclusive. Supporting epilepsy awareness also helps reduce stigma, paving the way for a more understanding and supportive world.
When people understand how to support someone with epilepsy, they become part of a network of care and compassion. Epilepsy doesn’t define us, but the support we receive can shape how we experience life with this condition. Everyone has the power to make a difference simply by being informed, empathetic, and proactive.
Epilepsy Awareness and Advocacy
Epilepsy Awareness Month is a reminder of the power of education and advocacy. For many of us living with epilepsy, every conversation, every article, and every supportive action contributes to a society that is more accepting and understanding. Awareness isn’t just about sharing facts; it’s about creating a world where people with epilepsy feel safe, valued, and fully seen.
Raising awareness helps break down the stigma that surrounds epilepsy. Misconceptions can isolate people, creating barriers to employment, social interactions, and even healthcare. Advocacy, on the other hand, helps to build a more inclusive society—one where epilepsy is understood as a medical condition, not something to fear or misunderstanding.
This month, I encourage everyone to take a moment to learn about epilepsy, whether it’s by reading about it, listening to someone’s story, or supporting epilepsy organizations. There are many ways to make a difference:
- Participate in Epilepsy Awareness Events: Many organizations host events, walks, and talks during November. Joining these events, whether in person or virtually, helps to show solidarity and support.
- Share Information: Social media is a powerful tool for spreading awareness. Sharing educational resources, infographics, or personal stories can reach people who might otherwise not be exposed to accurate information about epilepsy.
- Support Epilepsy Advocacy Groups: Many organizations work tirelessly to support people with epilepsy and push for policy changes that improve accessibility and healthcare options. Supporting these groups—through donations, volunteering, or simply spreading the word—creates a ripple effect of support.
- Wear Purple: Purple is the international color for epilepsy awareness, and wearing it during November for Epilepsy Awareness Month, can be a subtle yet powerful way to show your support. Each small action reminds people that they’re not alone.
Epilepsy Awareness Month is an invitation to open minds and encourage empathy. Through understanding and advocacy, we’re not only improving the lives of those living with epilepsy but also contributing to a world where no one is defined by their condition. Epilepsy may be a part of my journey, but awareness helps shape a future where that journey is shared, supported, and fully understood.