A powerful personal story on ableism, epilepsy, and invisible disability.
About the Author
Sheena has chosen to share her deeply personal story with the NeuroNestHub community to help broaden understanding around invisible disabilities and lived experiences of neurological differences.
At NeuroNestHub, we primarily focus on neurodevelopmental conditions such as ADHD and autism, while also creating space for diverse neurological experiences that shape how individuals think, feel, and navigate the world. Stories like Sheena’s remind us that neurodiversity is not limited to diagnoses alone, but includes varied lived realities that deserve understanding and empathy.
In respect of her wishes, this article has been kept true to her original voice and perspective, with only minimal formatting and language corrections for readability.
We sincerely thank Sheena for trusting NeuroNestHub as a platform to share her journey and contribute to a more inclusive and compassionate conversation.
Introduction
Most people begin their day assuming their energy will last until evening.
I begin mine knowing I am already operating at about 60% battery.
That missing 40% is not due to laziness, poor discipline, or a lack of ambition. It is the invisible cost of living with a neurological condition that most people only notice when it becomes dramatic.
“Living at 60% Battery” reframes disability not as an absence of ability, but as a different rhythm of capacity, a perspective that challenges how society defines what is “normal.”
The Dual Bias – Before and After Being Known
I chose the title “Living at 60% Battery” because much of the bias I have experienced operates both before and after people truly know me.
Even before interacting with colleagues or entering a workplace, the label of being “handicapped” often shapes assumptions about my capability, reliability, and ambition. There is a quiet pre-judgment, a perception of fragility or limitation that precedes any evidence of my work or performance.
Then, once I am in a role, a different but equally persistent bias emerges: the expectation that if I am not actively having a seizure, I should function “normally.” Epilepsy is often reduced to its most visible moments, while the everyday realities of neurological fatigue, cognitive strain, medication side effects, and the need for structured pacing remain largely unseen.
Because I appear functional and can perform well in focused bursts, sustained productivity and constant energy are often expected without accommodation. Flexibility becomes conditional, rest is interpreted as a lack of motivation, and boundaries can be mistaken for unwillingness.
“Living at 60% Battery” captures this dual experience, being underestimated before I begin and overestimated once I start as I navigate a life that requires intention, resilience, and a redefinition of sustainable capability.
Why Sharing This Experience Matters
While “normal” is different for everyone, I share my experiences as someone who lives outside the commonly accepted version of it. My intention is not simply to explain my personal reality, but to open a wider conversation.
Sharing these experiences serves several purposes:
1. To Humanise What People Misunderstand
Most people only see seizures, productivity, or social presence. They rarely see the invisible labour behind stability, the fatigue, medication trade-offs, and the discipline required to pace one’s energy.
2. To Give Language to Those Who Don’t Have It
Many people live at their own version of “60% battery,” often feeling guilty, lazy, or broken. Hearing these experiences articulated can bring validation and relief.
3. To Challenge Productivity Culture
My life questions the assumption that human worth must always equal output. In a world obsessed with efficiency and stamina, that is an uncomfortable but necessary conversation.
4. To Reclaim My Narrative
Explaining my reality in my own words is a form of agency. It shifts the story from limitation to lived experience.
5. Because My Perspective Is Not “Normal”- It Is Rare
And rare perspectives can often illuminate truths that conventional ones overlook.
Living With Epilepsy Beyond Seizures
I live with epilepsy, mostly controlled through medication, but the condition still brings significant fatigue and the need for 8–10 hours of sleep.
Most people understand epilepsy only as seizures. What remains largely invisible is what happens between those episodes and how it shapes everyday life.
Living with epilepsy often involves navigating:
- Invisible exhaustion and brain fog
- The neurological impact of long-term medication
- Structuring life around energy rather than ambition
- The grief of accepting limits imposed by the body
- Choosing quiet and solitude without it being mistaken for sadness
- Managing disclosure in friendships, relationships, and workplaces
- Setting work boundaries while dealing with unpredictability
Over time, this becomes an ongoing internal negotiation between who one once imagined becoming and what the body can realistically sustain.
The struggle is not purely medical; it is deeply personal.
The 60% Rule
Over time, I began to understand something I now think of as the 60% Rule.
If you know you are starting the day with only sixty percent of the energy most systems assume you have, you cannot spend it carelessly. Every commitment, conversation, and ambition must be chosen with intention. It means prioritising sustainability over constant output, balance over speed, and recovery over performance theatre.
The 60% Rule is not about doing less. It is about doing what matters with the energy that actually exists.
Redesigning Life Around Energy
When energy becomes a limited resource, the way one designs life inevitably changes.
For much of my life, I imagined living in a fast-moving metropolitan environment and building a career within its intensity. Over time, however, my priorities shifted.
I began wanting something very different, a slower, healthier rhythm within a culture that often glorifies pressure and speed. I found myself seeking quiet in a noisy world.
Gradually, I started drifting toward solitude. Contrary to common assumptions, this is not inherently unhealthy; solitude and loneliness are not the same. My brain now functions better with lower stimulation, and comments like “You should go out more” often miss that neurological reality.
At the same time, the career plans I had carefully built began to feel uncertain. I had to revisit key pivot points in my life and reconsider the direction of my professional journey.
Questions That Emerged
- The tension between achievement and well-being
- Whether international education could offer reinvention
- Navigating career pauses and uncertainty
- Finding the courage to prioritise balance over burnout
These were not easy decisions, but they became necessary ones.
But the most complex adjustments are not logistical. They are internal.
The Invisible Emotional and Cognitive Load
Living with long-term neurological medication not only alters physical rhythms, it subtly reshapes emotional and cognitive ones as well.
The personal dimension brings its own complexities.
Life begins to include challenges such as:
- Distinguishing fatigue from depression or neurological effects
- Adjusting to identity shifts when brain chemistry is medically managed
- The quiet discipline required to remain consistent with treatment.
Alongside this runs the daily effort of masking limitations in physical, cognitive, and social spaces.
Everyday Realities
- Performing wellness in professional and social environments
- Navigating expectations of constant energy
- Repeatedly explaining limitations to others.
- Carrying internalised guilt for resting
Over time, this creates a difficult question:
At what cost am I appearing normal?
The Myth of 100% and Systemic Bias
Many of these experiences are not isolated misunderstandings. They emerge from a deeper cultural assumption that I think of as the Myth of 100%.
The Myth of 100% is the belief that people should function with constant energy, focus, and emotional stability. Modern workplaces and social expectations are built around this idea of uninterrupted capacity.
But no human being actually operates at full capacity all the time. Some of us simply live closer to that reality every day.
When society measures everyone against an imagined 100%, anyone living at 60% automatically appears deficient, even when they are functioning with extraordinary discipline.
Core Pillars of Prejudice
1. Ableism
Ableism assumes the default human experience is able-bodied, consistently energetic, and neurologically stable.
2. Productivity Bias
Modern workplaces often equate worth with output, stamina, and availability.
3. Invisibility Bias
People tend to validate what they can see, dismissing invisible symptoms.
4. Pre-Judgment Based on Disability Labels
Labels can trigger assumptions before any real interaction or evidence.
5. Normalcy Bias
If someone is not visibly in crisis, they are assumed to be completely fine.
Conclusion: Redefining Capacity and Strength
Living at 60% battery has taught me that capacity is not character.
My energy levels do not measure my ambition, intelligence, or commitment. I am neither fragile nor heroic. I am simply human, navigating a nervous system that requires intention.
What I need is not pity or lowered expectations, but understanding and sustainable structures. When we stop measuring people against a rigid idea of “normal,” we make room for different rhythms of strength.
And in that space, everyone functions better, not just those of us with visible or invisible disabilities.
I do not live a smaller life.
I live a measured life, and that is not a weakness.
It is wisdom.
So I leave you with this:
If you met someone operating at 60% battery, would you see a limitation or would you reconsider what “normal” truly means?
Discover real stories, practical resources, and a growing community at NeuroNestHub, and if you have a story to share, we’d love to hear from you: https://neuronesthub.com/
📚 Further Reading
- Learn more about epilepsy and its impact on daily life: https://www.who.int/news-room/fact-sheets/detail/epilepsy
- Understanding ableism and invisible disabilities: https://www.accessliving.org/newsroom/blog/ableism-101/