Sick and Tired: The Fight to Keep Our Healthcare While Our Bodies Break Down on the Steps of the Capitol
EDS zebras took to The Hill on Monday to speak to their reps to salvage our healthcare as we know it. A real look at what patient advocacy looks like off Instagram.
Let’s talk about the kind of grit it takes to crawl to Capitol Hill in a failing body, only to beg not to be forgotten by the very systems trying to erase us.
On Monday, June 30th, I joined the Bobby Jones CSF nonprofit and a tribe of rare disease warriors—patients, parents, and advocates—to walk (or roll, limp, and collapse) into the halls of Congress. We came with a mission: to urge lawmakers to protect what’s left of rare disease research, fight to restore NIH grant funding, and plead for continued access to the safety nets that keep us alive—Medicaid, Medicare, and SSDI.
And while the group photo we took in front of the Capitol at 9 a.m. might’ve looked polished on Instagram, here’s what it didn’t show:
Two people in our delegation collapsed with POTS-related syncope less than 100 feet into the two-block walk to the Rayburn building.
The heat was brutal. The walk was short by "normal" standards. But we aren’t normal. We are the chronically ill—fighting to be seen in bodies that don't regulate temperature, blood pressure, or energy like everyone else’s.
And we pushed through anyway and applied nurse-style rescue methods.
Why We Showed Up: What the "Big Beautiful Bill" Means for Us
This week, the Trump administration’s "big beautiful bill" is moving through Congress and we were there for the “vote-arama” and the vending machines filled with Celsius energy drinks for Congressional staffers who stayed up all night to pass the Senate version. The bill now in the House is loaded with language that should terrify anyone who relies on government systems for survival—especially Medicaid and SNAP.
The Congressional Budget Office has confirmed the devastating consequences: nearly 12 million individuals, disproportionately disabled and chronically ill, stand to lose their healthcare coverage.
An example of hidden ramifications in the bill is under the guise of “work requirements” are clauses that threaten to revoke benefits for those who can’t prove they’re working. They say there’s exemptions for those who are sick, caregiving, disabled and students - but will they be systemically ignored and required every year to prove it in paperwork re-authorizations? Pay close attention to this if you are on Medicaid!
The fine print is cruel:
If you can't work, you must prove over and over again why.
If your illness isn’t visible or fluctuates, you risk being kicked off coverage.
If you’re already marginalized—Black, brown, disabled, low-income, or chronically ill—you’re more likely to fall through the cracks.
This isn’t healthcare policy. It’s policy destruction.
And it’s going to literally kill people.
They’re Cutting the Cure Before It Exists
In the same breath, NIH grant funding for rare disease research is being gutted. That means fewer studies, fewer treatments, and fewer chances for patients with Ehlers-Danlos Syndrome, Chiari malformation, mast cell disease, dysautonomia, and other rare conditions to be seen, believed, or treated.
The research lifeline is being choked out while simultaneously telling patients, “Go get a job or lose your coverage.” Obviously they do not understand what chronic illness and dynamic disability really is (as they raid Medicaid for their privileged persons tax cuts.
The Hidden Cost of Advocacy
Showing up to the Hill is often treated like a performative pat on the back. But for us, it’s a full-contact sport with our own bodies as opponents.
We bring (and wear full contact) cooling towels, compression socks, electrolyte and ice packs, and wheelchairs. We plan routes by elevator access and proximity to bathrooms. We’ve learned the hard way over the years to Uber an not try to walk between the Senate and House buildings. We really do pack meds in baggies next to our congressional talking points. And even then, it’s not always enough. Last year someone passed out at the mahogany table in the Senate meeting.
It takes courage, vulnerability, and absurd levels of physical and emotional endurance to crawl into offices that may not care what happens to you, but smile politely while we plead our case anyway.
Still, we do it. Because if we don’t show up, we’re erased.
What You Can Do (Without Passing Out on the Sidewalk)
Not everyone can come to DC—and that’s okay. You shouldn’t have to destroy your body to prove your worth or your need for care. But you can still use your voice. It matters more than ever.
👉 Go to https://www.house.gov/representatives/find-your-representative and type in your zip code.
👉 Call or email your representatives right now! Ask them to:
Reject Medicaid work requirements.
Restore NIH grant funding for rare and chronic illness research.
Protect Medicare, Medicaid, and SSDI for the disabled community.
Be clear. Be loud. Be annoying. This is for the survival of our zebra tribe.
Last Looks from the Hill
We are not lazy. We are not faking. We are not expendable.
We are the canaries in the healthcare coal mine. If we go down, others will follow.
So while the photos might show us smiling in front of marble buildings, know this: it’s not performative—it’s resistance. We’ll keep showing up, sweating through cooling towels, clutching electrolyte drinks, and demanding a future where people like us aren’t punished for being sick.
Because even when our bodies are failing, our voices aren’t.
—Zebra’s Underground
"Where illness is real, resistance is louder, and the truth doesn’t care if it’s pretty. We showed up when it mattered."
Thank you!!!!
Thank you❤️🦓