Lived Experience and the Unique Challenges Women Face
By Dr. Tiffany de León, PhD, LMFT
As someone who lives with epilepsy and has supported many others on their epilepsy journey, I can say it is deeply unpredictable. But for women, there are uniquely complex layers that are not always talked about. I have experienced some of this myself and have witnessed it in the many women I have supported.
One of those challenges is how hormones interact with seizures. There is even a specific type of epilepsy called catamenial epilepsy that is directly related to the phases of the menstrual cycle. However, hormones are constantly fluctuating and can lower seizure thresholds across all types of epilepsy. Many women notice their seizure patterns shift around their menstrual cycle, pregnancy, and menopause. There is also emerging research suggesting that women with epilepsy may enter perimenopause earlier than those without epilepsy. All of this adds another layer of unpredictability and can make epilepsy more difficult to manage with medication alone.
There are also gaps in diagnosis and treatment. Historically, medical research has not always centered women’s bodies or experiences, and that continues to show up in epilepsy care. Many women report feeling dismissed when they bring up cycle-related symptoms or side effects that are not considered “typical.”
Equally important is mental health. Anxiety and depression are common for people living with epilepsy, but they are often experienced in deeply personal and complex ways. There is the anxiety of not knowing when the next seizure will happen, how it might impact others, or whether you will be understood. For me, having both focal aware and tonic-clonic seizures, there are moments where I question my safety if I am alone. This is something I have heard echoed by many other women. That level of uncertainty can weigh heavily.
There are also social pressures. Concerns about safety, independence, and stigma can feel amplified, especially when it comes to pregnancy, parenting, and relationships. Some couples choose not to have children out of fear of passing down epilepsy. Others struggle with shifts in relationship dynamics, where one partner may take on a caregiving role, impacting intimacy and connection. There is also the unspoken expectation for women to hold everything together, which can make asking for support feel even more difficult.
But there is also resilience. Women have always found ways to adapt, advocate, and build community. The more we speak openly about these experiences, the more we create space for better care, stronger support systems, and deeper understanding.
✨
“Behind every diagnosis is a woman learning how to trust her body again.”
A Clinical and Mental Health Perspective: Supporting the Whole Person
By Brittany Washington, MA, LMFTA
Building on this lived experience, it is important to also understand epilepsy through a neurological and mental health lens. Epilepsy is not just a condition of recurrent seizures. It is a disorder of the brain that impacts emotional regulation, stress response, cognition, and overall psychological well-being.
Epilepsy affects an estimated 65 million people worldwide, including about 25 million women. In the United States alone, approximately 1.1 million women are living with epilepsy. These numbers matter because they remind us that women with epilepsy are not a small or invisible population. They are students, mothers, professionals, caregivers, partners, leaders, creatives, advocates, and high achievers. Many are navigating both a medical condition and the expectation that they should not let it slow them down.
In my work as a therapist, I sit with women who are not only managing seizures, but also carrying the emotional weight that comes with them. I hear the fears that often go unspoken. The anxiety of being alone. The exhaustion of constantly planning for the unknown. The pressure to continue showing up in every role while navigating something so unpredictable.
What becomes clear is that epilepsy does not exist in isolation. It shapes how someone experiences safety, control, identity, and self-trust. Many women describe feeling disconnected from their bodies, unsure of when they can rely on them. That uncertainty can create a deep sense of vulnerability.
The burden of epilepsy often extends into every area of life. It can impact confidence, work, relationships, and family planning. Women may have to consider how hormones affect seizure activity, whether medications interact with birth control, what pregnancy may require, and how much of their diagnosis feels safe to share. These are decisions many others never have to think about.
There is also the emotional experience of living in a body that is often misunderstood. Epilepsy continues to carry stigma. Some women fear being seen as unreliable or incapable. Some have had their experiences minimized. Others have had to educate those around them just to be understood. Many carry the weight of trying to appear okay, even when they are struggling.
From a neuroscience perspective, this response is not surprising. When the brain experiences repeated unpredictability, it can shift into a heightened state of alert. This can present as anxiety, hypervigilance, or emotional fatigue. Some women become highly attuned to every sensation. Some overcompensate to maintain control. Some silence their fears to avoid being seen as fragile.
These are not weaknesses. They are adaptations. They are often intelligent responses to a world that does not always make space for vulnerability.
There can also be a deep sense of loneliness. When the body feels unpredictable and the world responds with misunderstanding or judgment, many women begin to hide parts of their experience. They may downplay symptoms, hesitate to ask for support, or carry more than they should on their own. Over time, this can create a painful gap between what they are living and what they feel safe to share.
This is why mental health care is not optional in epilepsy. It is essential.
Therapeutically, the work goes beyond symptom management. It involves rebuilding a sense of safety within the body, strengthening self-trust, and creating space for women to process their experiences without judgment. It is about helping individuals move from simply surviving their diagnosis to feeling more grounded, supported, and empowered.
At Epilepsy Reach, this is the heart of our work. Through an integrated approach that includes mental health services, support groups, education, and advocacy, we are committed to supporting the whole person, not just the diagnosis.
You are not just managing epilepsy. You are navigating a complex, deeply human experience, and you deserve support every step of the way.