The Weight that Won’t Wait: My Life with Lipedema

I am fat. You might imagine that I hoard Hostess Ho Hos in seam-screaming pajamas that sink into a permanently depressed sofa where a sticky remote lets me binge trash television and junk food to escape the unbearable weight and the overwhelming emptiness of an unfulfilled life. This is the fake fat fed to us in kids’ cartoons, coming-of-age romcoms, and midlife makeovers.

This is not my fat. Still, I’m forced to carry it and the cultural baggage that lumps my bulging flesh with overindulgence, impulsiveness, and laziness. I hold all of it. It hurts to mummify my arms and legs with thick compression wraps and girdle-like garments to bind the dimply parts of me that manage to balloon. This fat—my fat—won’t budge.

I’m one of an estimated 17 million American women who are largely invisible. I live with lipedema.

Lipedema is a chronic condition characterized by the abnormal accumulation of adipose or fatty tissue. It begins bilaterally in the lower limbs after gynecological surgery or hormonal-activated periods, such as puberty, pregnancy, and perimenopause in persons assigned female at birth (AFAB).

The lumps between the muscle and skin can cause excruciating nerve pain and can harden to impair joint movement, including the inability to walk in later stages of the disease progression.

Lipedema is incurable. Other than excising excess fat in a series of sometimes uninsured surgeries, there is little consensus about the most cost-effective and efficient treatment for a condition that is under-diagnosed and misdiagnosed.

It took five years of feeling medically gaslit and one chance cross-country trip to an Arizona specialist before I would be diagnosed with Stage 2 Lipedema.

Before Arizona, my connective tissue issues had been misdiagnosed as fibromyalgia, latent lupus, and an autoimmune disorder. “All I have is prayer and medicine, and I gave you medicine,” one doctor lamented after a year of prescribing hydroxychloroquine.

By then, I became accustomed to doctors describing my fat as “clinically unremarkable” and my pain as “anatomically impossible.” In exam rooms, I showed cellphone photos of my focaccia-like thighs and circled new fat lobules as evidence. My last rheumatologist repeated aloud what earlier doctors implied: Lipedema is not a real disease. I am just fat.

Deflated. I spend hours bedbound—mechanically pumped up in a blue astronaut-like suit lifting off to go nowhere. This is the only time when doctors recommend that I remain motionless.

At other times, I am walking on a desk treadmill, jiggling on top of an electric vibration plate, leg kicking with retirees during aquarobics, and dry brushing my doughy limbs as a form of manual lymphatic drainage—all to stave ballooning.

But, I’m still growing. Fat is folding over my kneecaps. Obesity compounds my condition, but I cannot Ozempic my way out of it. I live with lipedema.

So while health experts deliberate whether my debilitating and disfiguring fat condition is real or fake, I’m living with a weight that won’t wait.

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Aisha Durham is a Professor of Media and Culture at the University of South Florida. Durham is a Fulbright-Hays Fellow who has served as a cultural analyst for news and entertainment outlets, such as the Washington Post, Ms., NPR, and CNN.