A grassroots update on lipedema advocacy in Wisconsin and why I believe real change is coming.
I’ve testified in front of the Wisconsin Joint Committee on Finance. Professionally, I know how to walk into a room of legislators and make a case. But I have never once had to do that for myself, for my own body, my own health, my own care.
That changed this year.
If you’re a woman in Wisconsin who has lipedema, or suspects she might, I want you to know something: you are not invisible. And a small but growing group of us are working hard to make sure the systems that have failed us (insurance companies, healthcare providers, medical training programs) can no longer look the other way.
What’s happening right now
Over the last several weeks, I’ve been sending press releases to media partners across Wisconsin, including outlets in Northeast Wisconsin, to start building public awareness around lipedema as a health equity issue. I’ve also begun reaching out directly to local legislators and community influencers to request meetings, because awareness alone isn’t enough. We need legislative action.
The goal is simple, even if the path isn’t: we want health insurance companies to cover lipedema treatment. We want healthcare systems to recognize and properly diagnose it. We want women to stop spending years, or decades, wondering what is wrong with them, the way so many of us did.
We’re not alone and the tide is turning
Something significant is happening at the national level that gives me real hope. There is currently a bill moving through the New Jersey legislature that would require insurance coverage for lipedema treatment. New Jersey. That means it’s possible. That means the argument has been made, the votes are being counted, and the door is open.
And here’s something I just learned that stopped me in my tracks: the U.S. Department of Veterans Affairs already recognizes and treats lipedema. The VA. A federal system that covers millions of Americans has already decided this condition is real, it’s serious, and it deserves care. That precedent matters and we’re going to use it.
Why this is personal
I wasn’t diagnosed by a doctor. I found out I had lipedema because a stranger left a comment on a Facebook post. That’s it. That’s how so many of us find out, not through the healthcare system that was supposed to protect us, but in spite of it.
I had arm lipedema for years without knowing it. I was a marathon runner. I wore compression gear and didn’t understand why it helped. And because arm presentation is so underrepresented in lipedema content and education, I kept missing the signs and so did every provider I saw.
That’s the gap I’m trying to close. Not just for me. For every woman in Wisconsin who is still searching for answers.
This is just the beginning
Grassroots advocacy is slow, and it’s unglamorous, and some days it feels like shouting into the void. But I’ve seen what happens when regular people show up with facts, with stories, and with community behind them. Things change.
If you found this post because you searched “lipedema Wisconsin,” hi. I’m so glad you’re here. You’re not alone, and we are working on this.