What if They’re Wrong? Lipedema: The Disease They Call FAT.

By Heather Carrigan, Stage 3 lipedema lady, New Zealand

I still remember pushing play, the longer I watched, the brighter my light bulb moment shined. You mean it’s not my fault? You mean there is a name for this disease they call fat? It’s called lipedema.

“To finally find out, I did nothing to cause this disease, was so empowering- sprinkled with a touch of “I told you so.”

The relief that washed over me, as I listened to women share their lipedema journeys, something about their stories resonated so strongly with me.  The realization, that I did indeed know my own body, that I wasn’t just imagining something was wrong, and even that I had known, deep down, that this wasn’t my fault.  To finally find out, I did nothing to cause this disease, was so empowering- sprinkled with a touch of “I told you so.”

“For the first time in my life, I felt like I had an advocate, actually, a whole documentary full of advocates.”

I’ll be honest, it was the “I told you so” that made me want to show this documentary to friends and family and my doctors. For the first time in my life, I felt like I had an advocate, actually, a whole documentary full of advocates.

That didn’t stop me from feeling a little bit nervous as my parents sat down to watch. What if they didn’t get it? What if my dad got up and just walked out? Within minutes of watching, there were tears of understanding and realization, and they weren’t just coming from my mother and I. It meant a lot to me, that my dad finally knew, this wasn’t my fault.

“I was sick of leaving doctor’s offices feeling worse than when I walked in.”

I sent my new doctor a link to the documentary, The Disease They Call Fat – Lipedema, before my appointment. I was just so tired of being fobbed off, shamed and insulted. I was sick of leaving doctor’s offices feeling worse than when I walked in. This part of my life needed to change. I needed to be heard.  Being diagnosed was wonderful and terrible. To finally put a name to it, to have a doctor who didn’t insinuate that I did this to myself and that the fat was my fault, was euphoric. The realization that because of the delay in my diagnosis, I had few treatment options, was more of a downer.

“It’s never an easy subject to broach.”

The fact that early diagnosis could have changed my life, is what made me want to share this film with a family member, who I suspected had stage one lipedema. It’s never an easy subject to broach. As she watched, I saw a light bulb light up in her, as it had in me, and many of the questions she had, had some answers.

“It’s not my fault, I’m not alone, and it’s not the end of my story.”

Diagnosis is the first step in learning to live with this disease, the second step is finding a way to not let it get you down, especially on the bad days. When I am struggling, I watch the DVD again. I listen to doctors who get it, I let the words of other women, who are also learning to live with lipedema encourage me, and I know I’m not alone in this journey.

It’s not my fault, I’m not alone, and it’s not the end of my story.

note: for 10 minute preview of The Disease They Call FAT click here