Most people with epilepsy at workare doing it alone.
Disclosure is a wall. On one side are the people who have it, who are managing it, who are tired of carrying something alone. On the other side are the people who don’t — including, often, the people closest to them. The wall stays because for most working lives, it has to. Community is what’s possible behind the wall — a room where the explanation is already done, and the conversation starts at sentence three.
Opening soon. Leave your email — we’ll tell you when the door is open. Join before launch and you’re a Founding Member.
An illness in private is twice an illness.
In 1980, two sociologists studying people with epilepsy named a specific shape of isolation. They called it being in the closet with illness. It does something particular: you cannot find community with other people in the same position if neither of you can speak.1
Forty-three percent of employed adults with epilepsy have told their employer.2The rest are managing something in private — and managing other people’s readings of what they’re managing. The fatigue reads as flakiness. The fog after a seizure reads as checking out. The appointments pile up. The explanations don’t.
In rooms where people do speak — where both sides have already said the hard part at the door — the preamble is skipped. You don’t have to translate what an aura feels like. You don’t have to defend taking medication at lunch. You don’t have to explain, again, why you’re not going for the promotion this cycle. The conversation starts at sentence three.
That’s what’s behind this page.
Not a demographic. A condition in common.
Hourly and salaried. Warehouse floor and corner office. Newly diagnosed and decades in. On shift, on call, remote, between jobs. Rural broadband that drops in a storm and Midtown Wi-Fi that doesn’t. People who print what they read and fold it into their bag. People who scan on a phone between floors.
These are the same person in different rooms. The fear is the same. The rehearsals are the same. The quiet exhaustion of keeping a job while keeping a diagnosis is the same. The community is built for all of them at once, in plain language for each.
Four rooms to start. Go where you need.
General
The main room. News, wins, questions, whatever's on your mind.
Vent Space
AnonymousBad day? Need to let it out? This is the place. Everyone's anonymous here.
Career Corner
Job hunting, interviews, promotions, vocational rehab. The work stuff.
Ally Lounge
For supporters — partners, friends, coworkers who want to understand.
A few rooms. Quiet by design.
Spaces for different kinds of conversation: questions that need an answer, things that need to be said out loud, networking that isn’t all for show, a room for allies.
Moderation by people who live this, working from guidelines that are public. The rules are short. We apply them the same way every time.
Your tools travel with you. The seizure action plan you built, the disclosure work you did, the notes you kept — private to you unless you choose to share a specific output in a specific thread.
Notifications built to respect your nervous system, not ours. Email digest, Slack, or nothing at all. There are no streaks. There is no leaderboard. The platform does not win when you scroll longer.
This is not a support group, though people support each other here. It is not a medical forum — nobody here is going to diagnose anyone, and we don’t want them to. It is not an activism platform, though advocacy grows out of honest conversation. It is not a replacement for your neurologist, your therapist, your lawyer, or the people who love you.
It is a room where people who share a condition in common can speak without translating first. That is all it is. That is enough.
Your privacy is the platform.
Use any name you want. Keep your photo off. In some spaces — the Vent Space especially — nothing ties a post back to your account, not even a nickname.
Your tools live in your browser. The seizure action plan, the decision aid, the accommodation letter — none of it touches our servers unless you choose to share a specific output in a specific thread.
Your private notes are encrypted. We can’t read them. Only your key opens them.
We do not sell data. We do not run ads. We do not share with employers, insurers, or advertisers. We keep the logs we need to run the service and nothing more, and our privacy policy says that in plain language.
Your employer won’t find you here. Your recruiter won’t find you here. The ad network that decides which neurology clinic to show you this week won’t find you here either.
When does this open?
Soon — we're in the final build. Leave your email and we'll tell you the day the door opens. Join before launch and you're a Founding Member: first inside when we unlock, and the founding badge comes with.
Can my employer find out I'm here?
No. You can use any name you want. We don't require a work email. Nothing here is indexed by search engines. Your employer has no way to know.
What if I just want to read?
Plenty of members do. The conversations are yours to read for as long as you want before you write anything. There is no pressure to post, and no algorithm that nudges you for not posting.
What if I don't want epilepsy to be the first thing people know about me?
It won't be. Your name here doesn't have to reference your diagnosis. Your profile is whatever you choose to put in it. Plenty of members show up with an unrelated name and a plant for an avatar, and that's a fine way to be here.
How do I leave?
One click in settings. Your posts can stay, go up with your name taken off, or come down entirely — your call. We don't make leaving hard.
Is this moderated?
Yes, by people with epilepsy who are paid for their time. Community guidelines are public. We apply them the same way every time, and we don't let the community be weaponized against its members.
The door isalmost open.
Join the Founding Community now, and when the door unlocks you’ll be among the first inside — part of a community that started with people who believed it should exist before it did.
Come to read or to write, on day one or six months in. The door stays open.
When you don’t have grace for you, we do. We gotchu.
We’ll email you when the door opens. No payment. Nothing sold.
Sources
- Schneider, J. W., & Conrad, P. (1980). In the closet with illness: Epilepsy, stigma potential and information control. Social Problems, 28(1), 32–44.
- Ogawa, K., et al. (2024). Individual and relational factors related to disclosure of epilepsy in the workplace. Epilepsy & Behavior.