Kevin Kane
//
Getty Images
6 min read
Ever since middle school, I thought there was something wrong with my legs. The bottom half of my body felt extraterrestrial, like my limbs were drenched in something radioactive, with a rippled appearance and disproportionate curves that went beyond having an hourglass shape. But it wasn’t until I was 25 that I noticed a significant increase in swelling. During my period, I would have flare-ups, resulting in throbbing thigh pain until I was practically bedridden. I bruised easily, had constant numbness and tingling, and doughy softness. All the while, I felt something was off without any concrete explanation as to what it could be.
But then, about a year and a half ago, my algorithm had an influx of content about a condition called lipedema, and I increasingly became convinced I had it. Jump to this past March: Lipedema received heightened awareness when rapper and singer
Doja Cat
called learning that she had the disease “the craziest fucking epiphany,” on
TikTok
, adding that it had contributed to her body dysmorphia. “I always thought like, ‘Damn, what’s wrong with me?’” she said. The video received millions of views.
So what is lipedema exactly anyway? According to
Emily Iker, M.D
., it’s a chronic, four-stage, progressive adipose tissue disorder, characterized by inflammation, fibrosis (excessive buildup of hardened fibrous connective tissue), and pain.
The Cleveland Clinic
defines the condition as an abnormal accumulation of subcutaneous fat on the lower limbs, such as the hips, thighs, calves, and sometimes, the arms.
The Lipedema Foundation
characterizes stage 1 as having soft nodules and stage 4 as having a high infection risk and limited mobility. In advanced cases, lipedema can cause the inability to walk. “It’s a microvascular disease and a metabolic condition,” shares Iker, a distinguished leader in the field of lymphatic disorders and director at the Lymphedema Center in Santa Monica, California. The disorder often coincides with a period of hormonal changes during puberty, after pregnancy, or during menopause.
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Physically, because of the way the fat accumulates, lipedema is routinely misdiagnosed as cellulite or weight gain. When I was a teenager, the ripples on my legs were always dismissed as standard cellulite. It is unresponsive to traditional weight loss methods and is easily confused with lymphedema (a swelling condition caused by a buildup of lymph fluid), or standard fat. Lipedema is commonly genetic, and like Doja, the disorder also runs on my mother’s side of the family.
Although it’s a medical condition, lipedema is largely undetected, and most primary care doctors are unaware of its existence. “I would say 10 to 15 percent of the female population have it, if not more [while] 90 percent are misdiagnosed or undiagnosed,” says Iker, adding that she recently treated a 19-year-old patient who came in after seeing lipedema content online. There is a plethora of Facebook groups with thousands of members dedicated to getting answers about the condition, like Lipedema Besties, Lipedema Care, and Anti-Inflammatory Diet and More for Lipedema Ladies.
Perhaps the most unspoken effect of lipedema is on mental health; eating disorders, attempted suicide, depression, stress, fatigue, and low self-esteem are
highly prevalent
due to accelerated amounts of internalized body shame and routine medical gaslighting. “There is a mental health toll from carrying a condition that is quite painful and debilitating [and] people don’t believe you,” says Kasi Grosvenor, project manager at the
Lipedema Foundation
.
“Physically, because of the way the fat accumulates, lipedema is routinely misdiagnosed as cellulite or weight gain.”
“When I got the diagnosis, I cried for 24 hours,” says
Soraya Nodrab
, a content creator, who began posting about her PCOS and stage 3 lipedema after experiencing 14 years of misdiagnosis. She had previously blamed the symptoms on not being active enough, despite strict dieting and workout regimens. “Until then, I always thought it was my fault, so I thought it was fixable,” Nodrab adds. Since the condition can progress without being addressed, it can feel like tirelessly playing “Where’s Waldo” for a diagnosis.
Those with lipedema also can experience hyper-objectification due to the curves and shape. “People ask me where I’ve had my BBL and I’m like, ‘It’s not a BBL, it’s a condition,’” says Nodrab. Doja Cat also said on her TikTok that people noticed her exaggerated body shape caused by lipedema, and would “point and gawk,” adding with a hint of sarcasm, “It was so crazy to have all this ass. Boo hoo, boo hoo.” As someone who grew up in the early aughts and remembers the idealized skinny “heroin chic” body type, I was acutely aware of the size of my ass and how it didn’t make sense with my waistline. The Kardashianesque hourglass ushered in the “slim-thick” Instagram baddie of the 2010s, and although this was a closer re

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Source: https://www.elle.com/beauty/health-fitness/a71112228/lipedema-symptoms-cellulite-difference-explained/