Hi everyone. Long time lurker, first time poster. 👋🏻
I don’t know how much to explain so I guess I’ll say it all. I have a different problem than the average fatty (meant lovingly: I am a fatty too). When I hit puberty, I inherited lipedema. I’ve checked Reddit for posts/awareness on lipedema and the pickings are SLIM so let me explain, very briefly. Lipedema is a disease that only affects women. It manifests as five different types (which a sufferer can possess uniquely or in combination), and the types are all deposits of fat on and swelling of legs and arms. It can be your whole leg, just your ass, just your thighs, hips, and ass, just your lower legs, and your arms. Never the feet, never the hands. It’s not to be confused with lymphedema, which can affect any part of the body and doesn’t manifest as symmetrical the way lipedema does (ie lipedema sufferers like me will always have the same issue affect both right and left extremities in symmetrical ways).
Lipedema is a debilitating disease. These fat deposits differ from normal fat and they are completely unresponsive to weight loss attempts. Inevitably someone will say that that sounds like an excuse but it’s not. Read literally any medical journal article on lipedema. It’s a different kind of fat that cannot be lost. It can marginally help to wear compression garments and repeated sessions of liposuction can be a lifelong expensive treatment option but most countries, including the one I live in, do not cover the costs, nor is lipedema studied well enough to be on most doctors’ radars. The most advancements seem to have been made in Germany.
Anyway, all this to say the following: I have lipedema. I’m at stage 3. My type is whole leg. For me, it is ruining my life. I’m looking at a future of lack of mobility, which is where all lipedema sufferers inevitably end up. Lipedemic limbs are subject to fat deposits that increase in volume and size every day, nonstop bruising, swelling, pain, and the torture of lugging around these limbs. It’s difficult. I am in constant pain, I can’t find pants that fit ever, and I can’t comfortably sit in or fit into any chair with certainty. I weight 310 pounds and my legs represent 200 pounds of my weight. I’m obese without the leg deformity, don’t get my wrong: but having 200 pounds to lose that can’t be lost is different than having extra pounds to reverse.
Is this a sad story about how my life isn’t worth trying for? No. I am still dieting and working out, hard. I follow a keto non-dairy diet (the best kind for lipedema), no more than 1,300 to 1,800 calories a day of eating (depending on activity for the day), and go to the gym 6 days a week. I’ve already lost about 20 pounds and I’ve seen incredible gains (gainz?) in my arms, shoulders, chest, back, and collarbones (!)
But when I catch myself in the mirror, I want to die. My legs are huge. For reference, the circumference of my thighs is 40 inches. The circumference of my calves is 34 inches. My ass is enormous. I don’t mind working hard: I love it. But I feel like it’s all for naught. All I want is normal legs, even standard issue fatty legs, but I have deformed legs. I’m not being a sullen teen here (least of all because I’m 32): my lipedema is fat pockets on my knees bulging out all sides, saddle bags the size of soccer balls, calf protrusions Shaq could not grip with one hand. And this would all be fine if I could do something about it. But these deposits won’t move, ever. That’s what I’ve been told my medicine, doctors, lipedema experts. In fact, they’ll just get bigger even as I lose weight everywhere else. Thigh gap? Man I’d settle for a knee gap.
What do I do, guys? This sub has been a lifesaver and I get so happy and proud of you all, seeing your results or seeing you choose to start your day 1s. But what do I do? I’m fighting a battle I’ll never win. Please help me be motivated, or at least tell me I won’t look dumb af turning away from the mirror when doing squats. I hate the sight of myself. I hate the thigh spread as I come down. I hate to do an incline or seated anything. I hate my body for being this and doing this to me. I hate that I’ll never change it. Help me get over this, please.
(And if by chance there are any med students here who know of any positive things I could focus on, send it my way. I will say that I’ve never seen a single article on the benefit of lifting with lipedema, likely because most sufferers can’t manage even walking, let alone lifting. I keep hoping that means there is some unknown benefit.)
Please help. I’m at a loss. None of the messaging in my head is any good. I’m scared of going to a dark place. It’s almost like seeing results in the rest of my body has made me more sad, not more hopeful. My arms are getting ripped. My back looks amazing. My legs are deformed. Massively, disproportionately, eternally deformed. How does that stop sucking the life out of me?
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