The TBI Disclosure Trap Nobody Talks About

What it means to live with a brain injury and decide whether, when, and how to tell people

Do you tell people you have a brain injury?

In this solo episode of Rupture: The World of BestGuessistan, host Wendy Lurrie explores one of the most complex and emotionally charged questions surrounding traumatic brain injury and invisible disability: disclosure.

What starts as a simple checkbox on a job application quickly reveals something much larger. A system that forces people into impossible choices. Say yes, and risk being screened out. Say no, and risk losing the support you need.

Drawing from her own experience and conversations with others in the brain injury community, Wendy examines the hidden calculus behind disclosure. Who gets to be honest. Who has to stay silent. And why.

This episode moves beyond individual decisions to look at the systems that shape them. Systems designed for people who “start fine and stay fine.” Systems that struggle to accommodate change, disruption, and the realities of being human.

Because disclosure isn’t really a personal dilemma. It’s a structural one.

In this episode:

•  The moment disclosure first becomes a problem 
•  Why job applications feel like a trap 
•  What people with TBIs are actually afraid of 
•  Stories from the brain injury community 
•  The Ministry of Disclosure 
•  Invisible disability and masking 
•  Why there is no “right” answer 
•  How systems create impossible choices 
•  Rethinking what “working systems” actually do 

This is a conversation about brain injury. But it’s also a conversation about rupture, identity, and what happens when systems fail to account for change.

Watch the full episode on YouTube: https://www.youtube.com/@BestGuessistan

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Transcript

SPEAKER_00 0:00

Welcome back to Rupture, the world of Basgasistan. I'm Wendy Lurie. Today's episode is different. Today's episode has no guest. And the reason there's no guest is because of the specific aspect of TBI I want to talk about today, which is the topic of disclosure. Do you tell people about your brain injury? Who do you tell? How do you tell? When do you tell? And I don't think I understood at the beginning when I first came across this issue how big an issue it was. So let me tell you how it started, and then we'll follow along. So it started relatively early in the journey I've had since this since I had this head injury. And I needed a new job. And so I went to the very dark place known as applying for jobs online on LinkedIn. And a lot of you know what that's like, so I don't need to describe it. And I did all the stuff: applying, uploading, da-da-da-da-da, doing all this stuff. And then on every application, nearly every application, there was a question. And that question stopped me, dead in my tracks. The question was, are you disabled or do you have a disability? Some form of that. And I didn't know how to answer it, but I knew that it was a trap. The trap was, if you said yes, I have a disability, would you even make it past the first screen? If you said no, I don't have a disability, and you got the gig, would you get the accommodations you needed when you needed them? So I didn't know what to do. I felt on half of them I said yes, on half of them I said no. It didn't really matter. But it was a window into an issue that I was only beginning to understand. And to be fair, I was dealing with the early, early days of the head injury, dealing with the pain, not understanding the symptoms, just trying to like put one foot in front of the other. This wasn't the most important TBI-related topic I needed to focus on. And so I didn't really think about it that much. And it stayed that way for quite a while. But as this project has grown and I've talked to more and more people with TBIs, I've started to realize that it's a much bigger problem than I thought and that it needed some more attention. So what's happened since I've been doing the podcast is I've met a lot of people that I didn't know who have TBIs, who have been great to talk to. People have also sought me out, either through work that I that I've posted or introductions, but a lot of people with brain injuries have come to me and said, Can I talk to you? Because everyone who's in this like weird TBI community understands how unrelatable this condition is and how hard it is to find someone to talk to who will really understand and who won't won't make you feel like you're crazy. So I always say, Yes, like anybody wants to talk to me about their TBI, I am happy to listen. I'm happy to talk. And I've had just in the last few months, probably about over a dozen conversations with people, some of whom I've never met, some of whom I haven't been in touch with for years, who have TBIs. And they tell these incredible stories about their experiences, with how their injury happened and what the aftermath was like. And I listen, and sometimes these conversations are a half an hour, sometimes they're an hour, which is right at my cognitive limit, but I stay there because I know how important these conversations are. And at the end I say, wow, this was so interesting. And I think people would really benefit from hearing it. Would you consider coming on the podcast as a guest? And the answers were basically no. But they didn't start with no. They started with, I would love to, but that's a great idea, but and what followed the but was some version of, I don't want my employer to know. I don't want my peers to know. I'm looking for a job, and I don't want a prospective employer to know. And I was like, okay, wow, I am revisiting this problem I originally identified with the LinkedIn invites, but now this little sphere of knowledge has been expanded, and now I've got like a dozen people in it who are giving me a lot of information and helping me realize what a big issue this actually is. So I needed to do something. So I did what we do on Best Guess Stan when we have a new problem or a new situation. We create a ministry, and it's the ministry's responsibility to manage that situation. So I'm not going to read you the entire post about it or the whole ministry story. You can find that on Substack, but just a few lines. The Ministry of Disclosure. There is a ministry in Best Guessan that deals with this. The Ministry of Disclosure. It governs decisions that aren't really decisions. Say something, everything changes. Say nothing, nothing changes. Either way, there's a cost. So I sat with that and thought about that, and then I decided I needed to hear from more people. I needed a wider circle of people and voices and perspectives. So I went to a community that I trust. I went to the TBI subreddit, which may seem like a weird place to go, but if you know Reddit, you know Reddit. And I have been on Reddit about this almost since the beginning because it's where you go when you don't know where else to get a question answered. And I'm proud of the work that I have put on Reddit. And I'm proud of the community that I'm part of. I'm actually the number one poster in the community. That's not what I'm proud of. I'm proud of the fact that I trust this community and this community trusts me. And when there's a question about TBI and I post it on Reddit, I know that I will get honest, unvarnished truth. And if you've ever been on Reddit, you know what I mean about unvarnished. So I've picked out a few quotes that I think are representative of the sentiments of a lot of people in this community to this topic of do I tell people? So let me share a few. My family knew, as did some old friends, but that's it. At work I kept my head down, didn't talk much, and my coworkers were so self-involved that no one ever seemed to pick up on my deficits, which suggests other problems too. I believe that if anyone at work found out, I would get sidelined or pushed out. I'm using a burner phone because I want to share, but I don't want it coming back to haunt me. Sometimes I will have to explain obvious disabilities and side effects, but I never say more than I have to unless I plan to see the person regularly. I have pretty extreme ear and eye sensory issues, so I leave it at that because I don't want to explain my memory issues, slower processing, inability to converse with more than two people at a time, socialize for longer than a couple of hours before having to rest my mind, and the list goes on. And finally, I'm pretty open about it. I fell on my head and broke my neck. Do not recommend. Don't ever say that people with TBIs have lost their sense of humor because we haven't. But I'm an older lady and secure in my employment. So I feel a responsibility to use my privilege to break down expectations about what disability looks like and to advocate for accommodations for everyone. I mean, think about that for a second. Like, it's privilege to have a position, a job that's secure enough that you can tell people the truth about what you're going through. I mean, it's like mind-blowing. So it's really a Hobson's choice. There is no right answer, right? It's a you're damned if you do, damned if you don't. But I don't want to leave it there because that's a bummer of a place to leave it. And it's also really not where the story ends, because the story ends with the systems, because everything that we do here at Rupture ends with the systems. The rupture, the injury, is what reveals the systems. But I'm not at fault. You're not at fault. None of the people with these disabilities who need accommodations, it isn't any of our fault. And it isn't really, it becomes our problem because no one else will deal with it, but it shouldn't be our problem. The problem is structural. The problem are that systems were designed for people who started fine and stayed fine, as though nothing else happened and nothing else changed. And the reality is we all go through things. We talk about this on a lot of episodes. There are a thousand doors into rupture. You can get into rupture not just through a TBI, but menopause and grief and loss and burnout. There are a thousand ways, but we're humans and we go through things, and systems that don't account for that and don't accommodate that don't work for us and in the end won't work for anyone. And there's something else about the systems I want to say, which is sometimes a system is working. It's just that it's working to deliver a different outcome than what you think it's designed to deliver. And the best example I have for that is the disability system. I thought, and I think a lot of many, a lot of people think, that the disability system is designed to support people who can't work because they're disabled. That is the outcome they're trying to achieve, right? If you look at it through that lens, the system doesn't work. We all get denied, we all have to hire lawyers, we have to beg and plead and go through this process again and again. But if you think about it from a different point of view, the system does work. If you think that the objective of the disability system is not to support people, but to prevent fraud, to prevent people who the system deems as unworthy from accessing those benefits, in that case, the system is working exactly as intended. But in both cases, the problem isn't the individual, the problem are the systems, and that's what we need to advocate for, and that's what we need to fight for. Systems that are humane, that are adaptive, and that work for real people over time. Join me in the fight.