A Painful, genetic, connective tissue disorder

My Story

Black and white image of me. I'm a fat, black, bald woman with Lipedema. I'm sitting next to my 2nd floor apartment window. My right elbow is resting on the window and my right hand is resting on top of my head. I'm looking away from the window and the camera. I'm wearing a black sports bra and the folds in my arm can be seen.

What is Lipedema?

Lipedema is a painful, genetic, connective tissue disorder that breaks the Lymphatic System. Faulty connective tissues cause the Lymphatic system to be leaky. The body responds to the leak with chronic inflammation and the growth of fibrotic nodules that cannot be burned off with diet and exercise due to fibrosis or scar tissue-like tissues. 

1 in 11 women and people assigned “female” at birth were born with Lipedema and most of them do not know it or have been misdiagnosed as “obese.” I was one of those people until 2018. I was 38 years old when it was confirmed that I have stage 3 Lipedema in my legs and arms and its spread to my belly, back, buttocks, flanks, chest, breasts and face. 

big Legs

Lipedema is Progressive

I was not considered overweight when I was a small child. I was very flexible and, according to my mother, healthy. My mother was not considered obese, but sported a curvy body and bragged about having ran track and took modern Jazz dance as a young adult. She complained of leg pains often and wore compression to work. She would later pass away without ever knowing that these pains were caused by Lipedema.

Lipedema progresses with hormonal events like puberty, pregnancy, and menopause. It wasn’t until I was around 11 or 12 that I noticed a “cuff” on my inner thigh. Cuffs are physical attributes of more advanced stages of Lipedema. A fatty lump that left a crease at my inner knees on both legs and made me incredibly self conscious of my legs. 

I couldn’t run the way I wanted to. My legs felt incredibly heavy and I assumed this was due to over eating or under-exercising. They were also sensitive to being squeezed or poked, but I assumed that this sensitivity was something everyone felt. As I grew older, I maintained a gym membership. My gym sessions became longer and more intense over time and I became more restrictive with my food. 

Doctors, nutritionists, and dietitians all agreed that if I wasn’t losing weight, it was because I was doing something wrong. An Inability to lose weight with effort is also a symptom of Lipedema. 

 

You know your body best

Diagnosis

I learned of Lipedema late one night when I came upon an episode of The Doctors and they featured a Black woman with the little-known disorder. Her large legs  were exposed on stage with multiple cuffs that came all the way down to her ankles. Dr. Amron described the symptoms of the disorder as I looked on.  I remember saying to myself, “Do I have this?” before googling the rest of my evening away. 

My first attempt at getting a clear diagnosis was a complete disaster. The Stanford dermatologist accused me of trying to “get away” with getting liposuction, told me that I was shaped the way I was shaped because I’m fat, and that she didn’t need to refer me to any specialists because she knew exactly what she was looking at, a fat person that needs to go on a diet. I felt like I’d made a mistake, and didn’t seek a second opinion for another year. 

I was diagnosed 1 year later by Dr. Amron. As a result of gaslighting, I’ve been diagnosed a total of 4 times. Today  I tell my story so fewer people have to live it.