Patient Stories

Now I Know I’m Not Alone

Angelique is living with Lipedema, but like many patients, her story starts well before her official diagnosis.

As early as when she was a toddler, her mother noticed the fat build-up on Angelique’s legs, and she was told by doctors that Angelique had cellulite. Despite being very active as a child, Angelique gained a lot of weight and attended Weight Watchers by age 8. 

Her overall weight would yo-yo, but she continued to gain weight on her hips and legs into her teens. Doctors would recommend dieting and suggested that Angelique look into weight loss surgery. She was starting to live in a lot of pain and was frustrated by how dieting was hurting more than helping her. “I kind of just gave up for a while,” she said. (Lipedema has been shown to be resistant to dietary and exercise interventions.)

At age 30, she had weight loss surgery, and while she did lose some weight in her upper body, it was still difficult to move her legs, which now contained large fat deposits. Despite the surgery, her lower body remained large, and she was in constant pain. (Current research suggests outcomes of bariatric surgery may demonstrate reduction of total fat mass, but this loss of mass is less likely to reduce volume in Lipedema affected areas, or other symptoms such as pain)

She brought her concerns to a doctor who told her that she was a “smart girl and to do her own research.” She was then misdiagnosed with Lymphedema (Lipedema is commonly misdiagnosed with Lymphedema or obesity). 

By the time she finally found a doctor to properly diagnose her with Lipedema, she had lost all her mobility, which resulted in her being homebound and then living in a nursing home for two years due to the severity of her symptoms. Fortunately, she has found a supportive physician, and getting a proper Lipedema diagnosis gave her fresh hope. 

Although many women face a long journey to diagnosis, Angelique says that as a “Black, fat woman” who society expects to have a curvier body, she faced discrimination her entire life as she tried to get the medical answers she needed. She said she felt like she was alone on her journey, but now she has found a community, including the Lipedema Foundation, that has given her a sense of hope. She hopes sharing her story and her advocacy efforts will make a difference for future Lipedema patients.

“Now I know I’m not alone in this journey,” she said. “And there is hope in that.”

Check out the LF Patient Self-Advocacy Guide to learn more about advocating for yourself.