“I said, ‘Yes,’ and she goes, ‘Me too. I feel like I’m being stabbed right now.’ I was like, ‘I know exactly what you’re talking about.’” The woman told Finkenauer that she works three jobs and can’t afford to take time off when the pain flares up. Remembering the conversation, Finkenauer sounds angrier even than when she talks about her own ordeal: “It’s so frustrating that this is where we’re at—that we can’t find something better.”
Or rather, that we haven’t tried.
Finkenauer is a firm believer in pulling the levers of government and knows that what stands between her and a cure isn’t just advancements in science, but federal cash. It just so happens that the representative who chairs the sub-committee on funding for the National Institute of Health (NIH) is none other than Congresswoman Rose DeLauro (D-Conn.). When Finkenauer had to broach the topic with someone, that person turned out to be a woman and a survivor of ovarian cancer. DeLauro wasn’t just receptive; she signed on to Finkenauer’s caucus. Next, Finkenauer went to Congresswoman Nita Lowey (D-N.Y.), who chairs the House Appropriations Committee. It was standard protocol—to go to the members in those positions to talk about a relevant issue. It isn’t standard that both are women. Before 2018, Finkenauer notes, “that wouldn’t have been the case.”
So much of the conversation around representation is treated like an exercise in political correctness or like a standard pursued for the sake of Etsy merch. But Finkenauer’s experience is proof: It matters who sits in government. No one needed a woman to launch this caucus. But endometriosis has been a known condition since the 1920s and in that time no man has been its champion in the federal government.
“When it comes to women’s health, there is so much we don’t understand,” Finkenauer says. “And because [endometriosis] ranks at the bottom for funding from NIH, then there’s not those grant dollars available, so people don’t prioritize it.” All that misunderstanding and confusion means women continue to get diagnosed with endometriosis later in life, sometimes after suffering with its side effects for up to a decade or more. As Finkenauer puts it: “We deserve a heck of a lot more than this.”
Less than 24 hours before she’s slated to head to the floor, I ask Finkenauer how she feels. “I’m nervous,” she answers. “I’m more nervous than when I decided to run for Congress. It is a vulnerable thing to share and I think I am still afraid that people will read or hear or see the speech and think, ‘How can she do her job?’ But I am the youngest woman who ever flipped a seat…. And then I was the first freshman to pass a bill through the House in the first two weeks of the term. I have done the job. I hope constituents have seen me do it and want me to keep doing it. But this is one of my fights now. And this is going to be part of my story.”
The morning before Finkenauer’s floor speech, the Center for Reproductive Rights made its opening arguments at the Supreme Court, opposing an attempt to in Louisiana to enact anti-choice legislation that would leave just one clinic open in the state. The timing is not lost on Finkenauer, who feels her battle for research into endometriosis is tied to the battle for choice. “Having kids—I don’t know what that’s going to look like. I have a supportive partner, who’s been there with me through this and understands it all.” But, she continues, even with the advantage of comprehensive health care, a partner who gets it, and access to incredible doctors, the prospect of navigating her reproductive future is daunting. She imagines how other women feel.
This is the full spectrum of reproductive healthcare. This is what we mean when we talk about women making informed decisions about their bodies. She’s late for votes, but she wants me to hear this: “Women’s health is complicated. It’s so complicated. There’s a lot to it, and the government should fund it—and then keep out of it.”
On March 5, smack in the middle of her place of work, Finkenauer took to the podium and stared out at her colleagues. She announced the formation of the caucus and narrated how the condition has affected her own life. (Hours in agonizing pain; two laparoscopic surgeries.)
“There are so many women hearing this today who may be hearing their pain described for the very first time,” she said. She wanted them to know—they were not alone.
Mattie Kahn is the culture director at Glamour.