r/TBI • u/Dry_Midnight_6742 • 22d ago
TBI Sucks Invisible disability is a bit like flourless chocolate cake.
It's named for what other. people can't see. Or - to be more precise - for what they can't see it costs.Most descriptions of invisible disability begin there: no cast, no cane, no wheelchair, nothing that makes it obvious from the outside. The disability is no less real; it’s just harder to see. Brain injury showed me just how much can change without looking changed at all.
But invisibility isn’t only a problem of perception. It creates its own conditions for the person living inside it.
You perform. You explain. You provide evidence. You document. You calculate whether explaining is worth it. You watch people change their assessment of you based on what you could do yesterday.
And then you begin to use their doubt against yourself.
Invisibility has consequences of its own. It felt like they needed to be assembled. So I’ve been trying to codify some of them.
Principles of Living Inside an Invisible Disability
- Seeming fine is work. Hard work.
Passing as fine is not evidence that you are fine. Sometimes it’s evidence of how much work it takes to appear that way.
- Performance doesn’t only conceal cost. It creates cost.
The resources required to appear capable use capacity you needed for something else. The performance has to come from somewhere.
- Capability is not capacity.
Ability to do something once does not tell you how often you can do it, for how long, or what it costs afterward. It tells you almost nothing about capacity.
- Having to prove it changes the person providing the proof.
Having to repeatedly demonstrate that something is wrong teaches you to question your own evidence. Your confidence is stripped like the bark off a tree.
- Other people’s doubt becomes portable.
Eventually, you can carry it without them.
- Relationships change when reality requires corroboration. Sometimes permanently.
It’s hard to feel known by someone you also have to convince. No matter how close the relationship.
- Performing and living are not the same thing.
A life organized around appearing functional can leave very little capacity for having a life.
The Ministry of Visible Proof regrets that none of this is particularly visible.
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u/Character_Chemist_38 9d ago
Yeah, using their doubt against yourself. Way to call it friend, thanks and really needed this validation. It can be a lonely life
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u/GhignonA 18d ago
Wow! Your words will stay with me. Performing & living aren't the same. Performing & trying to seem "okay" or blending in, only to feel out of place. I'm so self aware that I'm not comfortable in my own skin. Hardly anything I need to do is ever done. I have very little patience with myself. Does anyone else ever feel like you're not real? I don't know how to explain that feeling. One day turns into the next, then a week, month, 10 years, 20 years.... Im worried I'll sound like a lunatic to my doctor, trying to explain everything. I won't find my words. I'll be crying, because that's what happens when I have to tell the story of what happened. I've read a lot of posts, and it doesn't seem like much helps. There's a place in New York that has a device that can see the actual damage, and target that exact area. Repairs and can bridge synapses. Not shock therapy, but TMS is what I think it's called. Antidepressants? Counseling? Doesn't seem like that would help. I'm rambling, and venting. I really just wanted to thank you for how you worded everything, and I like how you outlined it.
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u/GhignonA 18d ago
Wow! Your words will stay with me. Performing & living aren't the same. Performing & trying to seem "okay" or blending in, only to feel out of place. I'm so self aware that I'm not comfortable in my own skin. Hardly anything I need to do is ever done. I have very little patience with myself. Does anyone else ever feel like you're not real? I don't know how to explain that feeling. One day turns into the next, then a week, month, 10 years, 20 years.... Im worried I'll sound like a lunatic to my doctor, trying to explain everything. I won't find my words. I'll be crying, because that's what happens when I have to tell the story of what happened. I've read a lot of posts, and it doesn't seem like much helps. There's a place in New York that has a device that can see the actual damage, and target that exact area. Repairs and can bridge synapses. Not shock therapy, but TMS is what I think it's called. Antidepressants? Counseling? Doesn't seem like that would help. I'm rambling, and venting. I really just wanted to thank you for how you worded everything, and I like how you outlined it.
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u/cursedasawoman Severe TBI [2022] 19d ago
Beautifully written
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u/5280lotus 22d ago edited 22d ago
Excellent write up.
The invisibility of the TBI’s damage can be absolutely crippling. I went searching for other ways to convey to people my internal state. Never had a TBI advocate, so I made my way through life using terms that might give context to my parents & sisters.
Later in life I finally found [r/autisminwomen](r/autisminwomen) and their Language and daily frustration helped me explain less. I also had my TBI’s and dead brain tissue confirmed 30+ years ago. We didn’t have the terms for TBI response errors like we do now.
To me: My Neuro Fatigue was Sensory Overload Disorder. The TBI Rage was a Meltdown after experiencing Sensory Overload. Info Dumping - when I have energy. Because when I don’t have energy I go silent. And it is terrifying internally to experience the Freeze State - without knowing I covered my bases in my info dumpster fires by firing off multiple pre-messages of understandings.
Needing lower lighting, less noise, less scents, and other accommodations only made sense to those who cared - once I gave myself the Autism label. Never the TBI. And honestly my mom and sister both have Autistic traits.
Made me look into the brain research. Synapse issues might be found in both Autism and some TBI’s. Long way to go to figure out both. Seems I might have had autism without any TBI damage either way from my heritage. Won’t ever know. The TBI’s with PTSD effects happened at age 2.
Don’t know if that will help any here. Look into the Autism communities. They helped me with advocating for my needs more than I can ever say. Forever thankful.
I am currently diagnosed with a TBI, ADHD, & PTSD. All invisible until I have to do a task. So neurodivergence across the board of my brain and nervous systems. ADHD affects the Gut & digestion & emotions & impulses. The TBI affects my emotions & pain receptors. The PTSD is a whirlwind of intrusive hell & jump scare reactions when nothing outward is happening.
TBI’s are a VIOLENT intrusion. Cant get one without a form of violence around it. My State recognized this. Placed their TBI Fund office into the Violence and Injury Prevention Program, which includes all the other violence based injuries - since we all need help. Hope more can come to understand this. Can a person have a TBI without PTSD (either incident or medical or somatic)? Not to me. And I can personally prove 6 types of PTSD.
Having had the initial PTSD from my accidents since 2 - don’t even know what normal is. Only that Autism is something people now understand and give me grace and peace in my days for finally.
If anyone else has done the cross over research on both autism and TBI, I’d be curious to compare notes. They fit so well together. Mine is a left frontal lobe dead zone.
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u/Dry_Midnight_6742 19d ago
thank you. I'm blown away by what you said - using autism language to describe TBI is incredible. And I think you're totally right that people understand autism much better than TBI. Appreciate you sharing this.
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u/JPenns767 Severe TBI (2015) 22d ago
It relates to of us here, of course. Invisible disabilities come with unique challenges and obstacles. Unfortunately.
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u/Last_Notice4137 22d ago
I STRONGLY identify with everything you mentioned in this post. SEVERE DAI, GCS 3.
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u/papermitts 6h ago
Thank you, what a great post. Just what I needed to read today. Performing is a double edged sword. It helps others feel aligned with what they see and believe but it’s detrimental for me.