Lipedema: You are not making this up

Decades of being told it was my fault. It wasn't. I have lipedema.

I have been living with lipedema for most of my life. I just didn’t know it had a name until I was 30 years old.

I remember being in elementary school and noticing my legs were bigger than everyone else’s. I didn’t have the words for it then. For decades, I just knew something was different — and wrong — and that no matter what I did, nothing changed it.

So I did what you’re supposed to do. I went to doctors. I told them I couldn’t lose weight. I told them my legs were swollen and painful. And over and over again, I was talked down to. Dismissed. Misdiagnosed. Treated like I was lying or just not trying hard enough.

That is fat phobia. And it is everywhere — in society, in the media and absolutely in the doctor’s office. It is discouraging in a way that is hard to describe unless you have lived it. You are sitting across from someone who is supposed to help you, and instead they make you feel like the problem is your willpower. Your discipline. You.

It is not you.

I found out about lipedema at 30 years old — on social media, not from a doctor. But I got lucky. When I brought it to my new primary care doctor, she knew exactly what it was. She believed me. She changed my life forever. I now have a full lipedema care team, and I know how rare that is. I know not everyone gets that moment. And that is exactly why I am here.

That is why I started this Substack.

This is a space for people living with lipedema who are done being dismissed and ready to take their lives back. I’ll share what has actually helped me — the research behind it, the real talk about hard days and the practical stuff you can actually use.

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