I Have Lipedema, A Disorder That Leaves Me Trapped in a "Fat Suit" Of Water and Toxins

I’m one of those women who is very small on top and twice the size on the bottom. I have what are lovingly referred to by tabloid magazines as cankles, and in general my legs do not look like legs but like pale white tree trunks.
Publish date:
June 25, 2013
Cancer, health issues, obesity, lipedema

In an effort to get me to accept my ever-expanding body -- and stop believing that anyone whose eyes wandered from my face was staring in abject horror at my stomach -- my therapist used to tell me that I was “a body among bodies.” Some are thin, some are fat, some are very tall, some are very short, and there is every curve and line and lump in between; every hair color, eye color, and skin color.

“The world is a sea of bodies,” she would say, “and you’re one of them. If anyone is staring at your stomach, that is a problem they are having, not a problem you are having.”

This advice, along with talking about the many other things in my life that brought me to therapy, actually worked. Eventually, I got over the idea that the way I looked had anything to do with other people. This freedom gave me mental energy for other things, like my writing and my husband and world issues. But I still didn’t like my body.

Since early childhood it has gotten sick a lot and the older I got the more care it seemed to need -- specialized diets, restricted exercise plans, lots of massage and other body work -- just to stay functional. I’m 39 now; I’ve been in almost constant pain and/or discomfort since I can remember. It’s been one ridiculous rush to the ER after another, until finally, two summers ago, I was diagnosed with stage 4 papillary thyroid cancer for which I subsequently had surgery and radiation. My beloved therapist, by the way, died one month before I got this news.

You’d think that’s what this story is about, but it’s not.

This story is about how cancer treatment left me with a painful swelling condition in my head and neck called lymphedema, which led me to lymphatic therapy with a certified specialist at the local hospital, and how one well-timed question to her resulted in a diagnosis of lipedema, an underlying condition that made my body ripe for lymphedema and has probably contributed to almost every health problem I’ve ever had.

This is a story about my diagnosis and ongoing treatment for lipedema, an adipose fat disorder that traps sufferers in a "fat suit" made up of water and toxins that should get flushed from the body by the lymphatic system, but don't. Essentially, I weigh about 30 pounds more than I appear to because my muscles, especially those in my lower body, are saturated in unreleased lactic acid and I am swollen with fibrotic edema, muscle fibrosis, and an unholy amount of fascia.

Women with lipedema tend to be small on top and big on the bottom. The size difference can be 12/28 or 2/6. Lippies, as we are sometimes called, can be 500 pounds or we can be fashion models. We can gorge ourselves or starve ourselves and our condition doesn't change much.

I’m one of those women who is very small on top and twice the size on the bottom. I have what are lovingly referred to by tabloid magazines as cankles, and in general my legs do not look like legs but like pale white tree trunks. Or they used to, but I’m getting ahead of myself.

Unfortunately for women who have lipedema, the fat we store cannot be dieted or exercised off. There are two treatments: the controversial, expensive step of liposuction in Germany, where they have supposedly perfected the right technique for lipedema; and Manual Lymphatic Drainage (MLD), which is the path I'm taking.

According to advocacy groups and medical professionals that know or care, lipedema affects about 11% of American women but is rarely diagnosed or treated. The majority of doctors in the U.S. have never heard of it, and even in the face of evidence from websites printed out and brought to their offices say things like “That’s just a fancy word for 'fat."

They are wrong, but America is obsessed with fat people as the scourge of our society, as well as the idea that all fat people can -- and should -- lose weight the exact same way: “Put down fork; get off couch.” (I have read that troll-phrase fully 10,000 times on the internet, whenever there is an article on weight.) Calories in, calories out, we’re told. You want a “normal” BMI, don’t you? Just exercise and the weight will come off. Just stick to the plan.

In fact, lipedema “fat” isn’t fat in the traditional sense; it just shows up on a scale that way. Lipedema fat, which is “fat” stored in the wrong layer of your body, will never, ever come off through traditional diet and exercise. You have to manually push that shit out of yourself because lipedema fat is actually hardened water and toxins that your lymphatic system was supposed to flush out of your body each day, but didn’t.

The fluid stays there -- in my case, for the 30 years since I hit puberty -- and turns into fat cells, fibrosis, lipomas, and other nasty tissue that has to be broken down by hand and by electronic vibration with one of those expensive massagers from Brookstone. And then you pee it out. Lipedema treatment involves copious urination.

With untreated lipedema, you live in a constant and increasing state of toxic stagnation, which is super hot. I mean, literally. Lipedema makes you overheat easily because trapped fluid is actually hot inside your body.

I’ve always weighed more than I think I should. Not just more than I want to weigh, but 20, 30, even 40 pounds more than it seems women of comparable size weigh. (Unless everyone is lying. Please stop lying.) At the gym, everyone’s legs look like they take less effort to lift, to take each step, than mine do. Doctors never told me to diet, because I “wore my weight well” -- because I have a classic, if exaggerated, hour-glass figure -- and I already ate organic, home-cooked, dairy-free and gluten-free, which helped reduce symptoms of IBS and painful inflammation in my legs.

After my cancer treatment, as the lymphedema pain took hold of my life, I started gaining weight, despite regular exercise. My stomach got bigger; my legs got a lot bigger. I quietly went on a diet, counting calories for the first time in my life. On 1,400 low-fat calories a day, working out four times a week, I gained 10 more pounds.

And then I asked my lymphatic therapist the right question at the right time: “Why do my lower legs hurt when I walk?” I’d been asking doctors for 20 years, to no avail. A few minutes later, I had my answer.

Like lymphedema, lipedema is treated via an extended process of manual lymphatic drainage (MLD), along with compression wrapping your legs with short-stretch bandages several nights a week for a year. Every day for the rest of my life I will “skin stretch,” which is self-MLD and is what makes my lymphatic system operate somewhat effectively. Every day for the rest of my life I will wear compression garments on my legs to prevent my lymphatic fluid from collecting where it’s not supposed to.

I’m about six months into my year of acute treatment. As of last week, I have lost 25 pounds. That’s six inches around my abdomen, and four inches around my hips, ass, thighs, and calves.

I was ahead of the game with my eating habits. Lippies, as we are called, benefit from foregoing most dairy, gluten, and refined sugar; some use the Paleo diet. Low-fat seems to make our misplaced fat cells expand, though I don’t know why. There isn’t much conclusive research or study out there, and much of what there is comes from Europe, where they often treat lippies with tumescent liposuction.

Many lippies and MLD therapists are anti-surgery because it can ultimately hurt our lymphatic systems and actually worsen the condition over time. But I’m one of the lucky ones. I’m not in need of a surgical quick-fix. I was diagnosed in an early stage when I wasn’t actually looking for a weight-loss solution, just less pain.

And now I’m smaller, which is good but wasn’t the goal, and I’m in far less pain, which is amazing. I climbed a hill last week, a big one, with no pain. And I don’t gasp between my words anymore because there’s no longer fluid in my abdomen exerting pressure on the muscles I use to breathe and speak.

Is lipedema a fat disorder, as existing experts seem to think? Or is it an inflammatory condition, as many sufferers would argue? Perhaps it’s an autoimmune disorder, though that term seems so vague to me. In my case, I think I was born with shitty lymphatics, and nothing about my difficult childhood lent itself to banner physical health. We need more doctors to take lipedema -- and the entire lymphatic system -- much more seriously. Study us lippies and help us advocate for affordable, non-invasive treatment.

Study me. I’m stabilizing. I’m reversing. I’m going to get healthy.