What I Learned at My First Headache on the Hill

February 2026

Last week, I got the chance to limp through the marble halls of the United States Capitol building, telling my story to the people who actually write the laws.

Headache on the Hill is the largest federal migraine advocacy event for people with headache disorders in the country. This year, 282 advocates from 47 states descended on Washington, DC to conduct 280 Congressional meetings in a single day. Within 48 hours, we secured 6 new co-sponsors for one of our main “asks,” the HEADACHE Act—and that’s hopefully just the start.

For years, I’ve been hearing about this weekend from my coworkers at U.S. Pain Foundation, and especially since my new job title is “Content Editor and Advocate,” I decided this would be the year to throw my metaphorical hat into the ring. So here’s what I learned about migraine advocacy (and life!) at my very first Headache on the Hill.

a white woman with dark hair and glasses dressed in grey shirt and black skirt, holding a red cane, in front of the US Capitol building — *It’s me! With a headache! On the Hill!*

The legislation and talking points matter…

I learned the talking points about the three bills we were advocating for (see below!). And that’s important! But I was there with a team of people from my area who’d jump in if I couldn’t find the words. They knew the details better.

But nobody but me knows what it’s like to live in my body every day. Nobody else knows what I’ve been through. And it took until HOH—telling my story multiple times, in multiple contexts—for me to realize what I should actually be sharing.

Your story matters more.

My teammate Keely spoke about how invisible migraine pain is. Looking at her social media—and mine!—you might think she’s got it all: loving spouse, supportive family, travel to interesting places. But we don’t see the 15+ days a month she experiences migraines. They don’t see the emesis (vomit) bags she brings everywhere she goes, in case a migraine hits.

That made me think about the specifics of my own story. The first feature article I ever wrote—by far the biggest professional opportunity I’d had at that point—was about a weekend-long event. I planned to drive to a car show with the subjects of the piece, stay overnight, and spend the next day interviewing and exploring. But by the evening of the first day, I had a migraine so bad I flinched at every noise and found myself puking in the racetrack toilets. I drove home that night, hours through rural Tennessee, because every other option was worse. The next day was spent in a mostly-dark room, then I wrote the piece using what I had. What else was I going to do?

Turns out, that was the story staffers needed to hear. Not ‘I get migraines’ but ‘this is what it costs me, specifically, to live my life.’

I was (and am!) proud of the end result. But nobody saw how hard it was to attempt the biggest gig of my career with less than half the information and photos I’d planned to gather (oh yeah, I was photographing the piece too). And it’s not something I talk about—I have so many similar stories that until HOH it truly never occurred to me that anyone would care.

Turns out, that was the story staffers needed to hear. Not ‘I get migraines‘ but ‘this is what it costs me, specifically, to live my life.’

Headache disorders are bigger than migraine. Cluster headache. Trigeminal neuralgia. New daily persistent headache. Spinal CSF leak. Post-traumatic headache. We’re all struggling, and we’re all putting in the work to be there anyway.

In a message sent to volunteers after we returned home, AHDA Executive Director Julienne Verdi acknowledged the cost, thanking us “for the sacrifices you made to be there. For the courage it takes to tell your story. For the professionalism you brought into every meeting. You made headache disorders impossible to ignore.”

What we were advocating for:

The HEADACHE Act (H.R. 5536) would create a National Headache Disorders Initiative covering all headache conditions—not just the ones that get the most attention. It’s the first standalone federal legislation focused on headache disorders. Ever. And we desperately need the research it would provide.

We were also advocating for the Safe Step Act, which addresses “fail first” insurance protocols that force patients to try and fail cheaper medications before accessing what their doctor actually prescribed.

Finally, we were focused on supporting the CONNECT for Health Act, which would expand telehealth access—critical for the many people who don’t live anywhere near a headache specialist.

*Look at all these amazing people! I’m on the far right in a turquoise sweater.*

*These are the lovely folks from my geographical cohort who helped advocate with me.*

Even offices that won’t support you will still hear you out

Speaking of being ignored, I’m from Texas. I knew before leaving Austin that some of our meetings would be with offices unlikely to support our legislation. (…Or our human rights.) We went anyway.

And here’s the thing: we still got the meeting. We still got 15-30 minutes of dedicated time with our reps’ legislative aides and health policy staffers: the people who research issues, brief their bosses, and often draft the actual language of bills. We still got to make our case, even if I knew that it’d probably fall on deaf ears. If nothing else, it’s harder to pass laws that disenfranchise people when they’re sitting across the table looking at you. And this is a genuinely bipartisan cause, which helps. Or ought to.

Will it lead to real change in Texas? Probably not. But some staffers were more engaged than I expected—asking follow-up questions, making personal connections, asking specifics about how to fund the research we so desperately need. If nothing else, those staffers should hear stories like ours, over and over again, until they begin to understand.

My Texas HOH contingent with rep from Van Dunye’s office
My Texas HOH cohort with staffer at Rep Lloyd Doggett’s office
The larger Texas regional cohort at Senator Cornyn’s office
My Texas HOH cohort at Rep. Cloud’s office
My Texas HOH cohort with staffer at Rep. Julie Johnson’s office
My Texas cohort outside Coffee With [Ted] Cruz (we had to leave right as he got there, you can see him far in the background)

The meetings were easy. The getting there wasn’t.

I wanted to get this post written and up the day after I got back. It’s now been over a week and I’m still really struggling.

We were told to wear comfortable shoes and be able to walk 2-3 miles. I figured I could do that! 3 miles would be a push, but I scheduled a couple days for recovery, and figured it’d be worth it. And the prep materials noted that scooters would be available to rent to get between buildings.

Just knowing that someone saw me pushing myself as hard as I possibly can, and actually saw it? I don’t have words for what that meant to me.

I actually walked over 7 miles that day.

My chronic pain started at age 15– 7 miles is more than I’ve ever walked. Ever. And I saw nary a scooter. By the end of the day, I was very visibly struggling. A couple of people quietly kept an eye on me, which I appreciate more than I can say.

One of them later wrote me a kind note saying she admired me for being brave enough to do this by myself. Just knowing that someone saw me pushing myself as hard as I possibly can, and actually saw it? I don’t have words for what that meant to me. Like me, she didn’t realize quite how much would be physically expected of us; as a result, my new friend had a migraine so bad she ended up in the ER. She texted to see how I was doing, to which I replied “I managed to avoid the ER, I’m only regular debilitated!” But joking aside, the next step would have been the hospital for me too. I’m lucky I didn’t herniate another disc– there’s only so far you can and should push yourself.

I share this not to complain, but because it’s the reality of navigating the world with multiple disabilities—even in spaces designed for and by people who understand. Different kinds of pain are, well, different. HOH did a great job of providing Headache Care Rooms: quiet spaces on both the House and Senate sides where advocates could retreat if a migraine hit.

But this was organized for people with headache disorders, and rightly so! You can’t accommodate every single disability and at some point, frankly, the work has to get done. It was just how things shook out, because it took some wandering to figure out where we needed to be! But if you’re considering HOH and have mobility limitations, plan for way more walking than advertised. You don’t get to choose your schedule or when you’ll be able to rest. I would love to do HOH again but I realistically can’t without a motorized wheelchair / scooter of some kind. We’ll see!

a white woman with brown hair, glasses, and a purple knit hat in front of the Capitol building in washington DC

The gift of not having to explain

Beyond the meetings and the bills, this weekend emphasized the power of connections, like the one I just mentioned. It was a breath of fresh air to find a community that understood. I was lucky enough to get the chance to connect with some incredible people in the LGBTQIA+ affinity group, which was lovely—we exchanged media recommendations (please, go read Gideon the Ninth right now) and talked about ways that gender and sexuality can affect chronic pain and migraine treatment (a topic that doesn’t get nearly enough attention). I mentioned some of my posts where I write out scripts of exactly what to say in different specific medical situations, and someone with autism said those could be incredibly useful for them—an angle I’d never considered, and one that’s motivating me to finish up the other posts in that series.

It’s a marathon, not a sprint

But progress takes time. The people who’ve been doing this for years told us to expect setbacks, to stay connected, to keep showing up. It’s not always about the party line in the meetings: sometimes change happens while waiting for something else. Sometimes a compliment on a particular plaid turns into chitchat, which turns into a conversation, which turns into a connection. (Hi, new friend that I met at the Coffee for Cruz event who asked for a copy of the HEADACHE Act to take to HHS with him.)

To borrow Julienne’s words one more time: “Thank you for building power. Thank you for raising your voice. And thank you for making headache history with us.”

There are many ways to build power, to make history. HOH is doing it, and I’m so proud to be a small part of that. If you live with a headache disorder, or love someone who does, consider applying for the next Headache on the Hill. The fall virtual event is coming up, and applications for the 2027 in-person event will open later this year. No prior advocacy experience required—just your story, the willingness to tell it… and the ability to get yourself from point A to point B.

Janet Jay is a content editor and advocate with the U.S. Pain Foundation. She writes about chronic pain, invisible illness and patient advocacy at janetjay.com.

The Alliance for Headache Disorders Advocacy (AHDA) organizes Headache on the Hill. Learn more at allianceforheadacheadvocacy.org.