The Photo That Explains Why Lipedema Gets Missed

I looked healthy from the outside, but inside my legs were already painful, heavy, swollen, and reacting to a disease most people could not see.

This is me in 2015, three years after I was diagnosed with lipedema.
I was 23 years old then.

At 23, I looked healthy and normal from the outside. Inside, my legs were already painful, heavy, swollen, and reacting to a disease most people could not see.

And I know what many people might think when they see this photo.
She looks normal. And that is exactly the point.

Looking back at this photo feels strange, because I know how much I was already carrying in my body, even though I did not yet understand the full picture. I had a diagnosis, but I still had so many unanswered questions. I was still trying to understand why my legs could feel painful, heavy, swollen, and different from the rest of me.

Lipedema is not always obvious from the outside, especially in the earlier years, or in people who are otherwise lean, active, or young. You can look healthy in photos and still live with deep aching pain, tenderness, swelling, heaviness, bruising, and tissue that feels different from the rest of your body.

At that time, I still had so many unanswered questions. I had a diagnosis, but I did not yet understand the biology of what was happening in my tissue. I did not understand why sugar could make my legs flare. I did not understand why estrogen containing birth control seemed to make everything worse. I did not understand why my legs could feel so painful even when the rest of my body looked healthy.

That is one of the reasons I started LipedemaScience. Because a diagnosis is not always the end of confusion. Sometimes it is the beginning of finally learning how to understand your own body.

I want to get to know you a little better

So many of us arrive here with different stories. Some were diagnosed early. Many spent years being told it was just weight, hormones, aging, or something they were doing wrong. Some have had surgery. Some are still searching for answers. Some are newly diagnosed and still trying to understand what this disease means for their body and their life.

I would love to hear your lipedema story in the comments.

• When did you first notice symptoms?

• How long did it take before you found the word lipedema?

• What has helped you, and what do you wish more people understood?

Share as much or as little as feels right. I read your stories with care, and they help shape what I write about here.

I believe Substack has already made it possible to translate comments and notes, so feel free to write your story in your own language.