2.9 million American adults have epilepsy.Most of them are hiding it at work.
The majority of employed adults with epilepsy have not told their employer. Some are weighing the risk carefully. Others don't yet have the language for what's happening to them — the bone-deep fatigue reads as flakiness, the post-ictal fog reads as disengagement, and the people closest to them are starting to wonder if they care.
In a foundational 1980 study, sociologists Schneider and Conrad called this being in the closet with illness — and found it does something specific. It doubly isolates: you cannot find community with other people in the same position if neither of you can speak.1
This is the condition we serve.
An employment gap nobody names.
Adults with epilepsy are unemployed at two to four times the rate of the general population — one of the largest employment gaps of any neurological condition.2Not because they can't work. Because the systems that should support them don't exist.
of employed adults with epilepsy have disclosed to their employer. The rest are managing a secret that costs.
Ogawa et al., 2024
say secure work is extremely or very important. Only 37% say they have it. A decade of decisions made inside a system that was never built for them.
Collings, 1995, cited in Hawley et al.
For many, the fear of what might happen at work is more vocationally limiting than the seizures themselves.
Hawley, Roessler & McMahon, 2012
of ADA complaints from people with epilepsy involve being fired or disciplined — not hired. The violations happen afterthey've proven their value.
West, Dye & McMahon, 2006
of workplace accommodations cost employers nothing. Median cost of the rest: about $300. The barrier isn't money — it's knowledge.
JAN / U.S. DOL ODEP
experience clinical depression. Psychological distress predicts quality of life more strongly than seizure frequency itself.
Strzelczyk et al., 2023; Azuma & Akechi, 2014
The medical frame answers your neurologist's questions, not your manager's.
The inspirational narratives — the overcoming, the warrior, the long climb — don't pay for an accommodation. “Despite epilepsy”is a phrase invented by people who don't have it.
Most resources for people with epilepsy are clinical, focused on seizure management and medication. The rest are motivational. Neither helps with the Thursday presentation where brain fog hit. Neither helps with the morning after a seizure at the office. Neither tells you what to say to HR.
“We’re building what should’ve existed.”
An evidence-based resource hub, written by people who live this.
Every claim cites research. Every tool runs in your browser so your health information stays on your device. Every resource is held up to the same two readers before it ships: someone printing a PDF to read at the kitchen table, and someone scanning on a phone between meetings. If it doesn't serve both, it isn't ready.
The library spans six pillars — and grows as the work grows.
- Workplace Rights & Realities →
- what the ADA actually says, what it doesn't, and what enforcement looks like in practice
- The Disclosure Decision →
- framework, scripts, timing, and the research on what happens after you tell
- Accommodations & Workarounds →
- the ones that cost nothing, the letter template, the conversation
- Managing Seizures at Work →
- preparation, the coworker one-pager, the 48-hour post-seizure checklist
- Career Navigation & Vocational Rehabilitation →
- 50% placement in specialized VR programs vs. 9–21% in general ones, performance review strategy, the underemployment nobody names
- Thriving, Mind & Identity →
- self-efficacy as career strategy, energy management, and the grief of diagnosis nobody mentions — what the clinical literature calls disenfranchised grief
The same person in different rooms.
Everyone who works or wants to work. Hourly and salaried. Warehouse floor and corner office. Newly diagnosed and decades in. On shift, on call, remote, between jobs.
These are not different markets we are reaching. They are the same person in different rooms. A clerk in a rural county office and a VP in midtown are carrying the same fear, rehearsing the same explanations, exhausted by the same invisible work — in languages calibrated for different audiences. Every feature we ship is held up to both. If it serves only one, we go back to work.
A New York nonprofit, built in public.
Working with Epilepsy, Inc. is a New York nonprofit corporation and a 501(c)(3) tax-exempt public charity. The idea took shape in April 2025. The organization was incorporated in May 2025. The IRS determination letter arrived in July 2025. Since then we have been building in public — resources, tools, a community, and the infrastructure that holds them together.
WwE exists because something important was missing and no one else had built it. The editorial bar is high because the people who will read this cannot afford our margin for error.
Grants and individual donations.
Every gift funds more resources, more tools, and keeping the work free to read, download, and print. Our financial records are public and available to anyone who asks — start with contact.
Four doors into the work.
The Resource Hub is open. Bring it to the HR meeting. Text it to a friend who just got diagnosed. Print what matters and mark it up.
Open the Hub →Use any name you want, or stay anonymous in some spaces. Your employer won't find you there.
Join the community →The Hub grows as the work grows, and the best editorial feedback comes from people who live this. We read everything.
Contact us →Donation-funded means grace from people who believe this should exist. Every gift becomes more of what you are reading right now.
Support the work →When you don't have grace for you, we do. We gotchu.
- Schneider, J. W., & Conrad, P. (1980). In the closet with illness: Epilepsy, stigma potential and information control. Social Problems, 28(1), 32–44.
- Fraser, R. T., et al. (2018). Considering developing a specialized epilepsy employment program: The PEP Jobs Program paradigm. Epilepsy & Behavior. Hawley, C., Roessler, R. T., & McMahon, B. T. (2012). A comparison of workplace discrimination experiences for youth and adults with epilepsy. Journal of Rehabilitation, 78(2), 3–12.
- Ogawa, K., et al. (2024). Individual and relational factors related to disclosure of epilepsy in the workplace. Epilepsy & Behavior.
- Hawley, C., Roessler, R. T., & McMahon, B. T. (2012). Journal of Rehabilitation, 78(2), 3–12. The 87%/37% secure-work figures originate from Collings, J. A. (1995), cited in Hawley et al.
- West, S. L., Dye, A. N., & McMahon, B. T. (2006). Epilepsy and workplace discrimination: Population characteristics and trends. Epilepsy & Behavior, 9(1), 101–105.
- Job Accommodation Network (JAN), annual employer accommodation survey. U.S. Department of Labor, Office of Disability Employment Policy.
- Strzelczyk, A., et al. (2023). The impact of epilepsy on quality of life: Findings from a European survey. Epilepsy & Behavior.
- Azuma, H., & Akechi, T. (2014). Effects of psychosocial functioning, depression, seizure frequency, and employment on quality of life in patients with epilepsy. Epilepsy & Behavior.
- Fraser, R. T., Trejo, W., & Blanchard, W. (1984). Epilepsy rehabilitation: Evaluating specialized versus general agency outcome. Epilepsia, 25(3), 332–337. Confirmed in Fraser, R. T., et al. (2019). Epilepsy & Behavior.