Better Out Than In
A surgical story
Audio Version
An impossible number of days ago, I had a bilateral brachioplasty, thigh lift, and lipectomy to the calves. This is an aggressive way to treat lipedema (pronounced lip-eh-DEE-ma, or lɪpɪˈdimə for all the cunning linguists out there). Lipedema is a connective tissue disorder that results in fibrous fat nodules that one surgeon I consulted with described as “grape-sized balls of chia seeds caught in a net.” These nodules press on my lymphatic system, causing pain and swelling. Left untreated, lipedema can lead to lymphedema, circulation issues, skin infections, and, ultimately, immobility. Lipedema is chronic, progressive, and technically has no cure, though surgical solutions that remove the diseased tissue can offer long-term support. Non-surgical treatments include nutritional support, manual lymphatic drainage massage, graduated compression garments, pneumatic pumps, and just plain trying to make it through the day. It’s estimated that 11% of women and AFAB folks worldwide have lipedema, but that number is probably quite low because 1) fatphobia, 2) fatphobia, and 3) fatphobia.
Lipedema impacts body size, so misdiagnoses can include obesity and/or lymphedema. And, let’s be honest, the prevailing mainstream attitude is that fat people are immobile and gross, so all that pain and swelling is what you get for being fat and gross. Doctors often dismiss or downplay symptoms as par for the course of large body size and leave fat patients at a dead end. However, lipedema is not exclusively a fat person’s disease, so someone who charts a medically-approved weight who is experiencing pain or swelling in the legs may not undergo testing for lipedema, the easiest of which is to pinch a toe.
I learned about lipedema sometime in the mid-2010s after searching for a solution to why my shin bruised if the cat stepped on me and why I couldn’t sit on the floor and play with my toddler due to the searing, burning pain in my legs. My doctor dismissed me. She said I should eat more vegetables and exercise more. I reminded her that we attended the same dance fitness class each week.
I’m still surprised when I go to a doctor or massage therapist who doesn’t ask “what’s that?” when I tell them that I have lipedema. Initial self-diagnosis is common and many times I’ve presented a sheaf of printed out pages from The Lipedema Foundation or Dr. Karen Herbst’s sprawling website to have a provider say, “Oh, yeah, that’s you.”
Over the years, I’ve done everything that is recommended to stem the tide of inevitable misery, while lipedema continued to erode my quality of life. I’ve changed my diet. I’ve wrestled with tubing and strapped myself in for two-hour stretches of a pneumatic leg pump several times per week. I’ve worn every make and model of compression garments, including the crotchless surgical kind and the gentler, everyday athletic compression like Superfit Hero. I’ve had physical therapy and MLD massage. I even had three water-assisted liposuction procedures in 2016. It took me two and a half years to convince Cigna, my insurance provider at the time, to accept that the surgeries were medically necessary despite decades of research proving that lipedema is a disease and that fat removal is a cost-effective, long-term solution.
Regular liposuction doesn’t work on fibrotic nodules. If you’ve ever drank boba tea, you’ll know why. Regular liposuction is like sucking tapioca pearls through a straw. A nice, clean, one-at-a-time pop, pop, pop! Lipedema fat is more like…well, you basically have to powerwash it out, adding additional fluid to dislodge it from its fibrous net and then sucking the whole mess out at once.
As it stands, surgical intervention for lipedema is considered cosmetic. Most people who successfully plead their case to an insurer do so on the basis of medical necessity after years of devastating infections and mobility loss. Some surgeries are covered on the basis of a self-insured plan or another administrative loophole. Without adequate insurance coverage for this disease, lipedema patients who seek a surgical option often pay tens of thousands of dollars for complex procedures with out-of-network, specialized surgeons.
I watched my dad struggle with lymphedema as he became increasingly and alarmingly immobile. During the last few years of his life, he felt constant, white hot pain that negatively impacted every relationship that he held dear. The red, hardened skin on his lower legs required meticulous daily care provided by my devoted mother, who witnessed the love of her life—a proud, strong, provider—rage helplessly against his eroding sense of self. Eventually, skin infections that required long hospitalizations made everything so much worse for him, and I couldn’t bear thinking about what would come next if the doctors could not keep the oozing lesions and secondary inflammation under control. Mercifully, perhaps, he died before we had to find out.
Dad slipped quietly into forever on a calm summer evening in August, at home with Mom, watching a White Sox game on TV. The sweetness of his final moments are no match for the long, slow descent of agony that lymphedema brought to my dad and our family. I’d settled into a groove with my roster of conservative lipedema treatments that made me complacent to its death march toward lymphedema. I made concessions like wearing compression most of the time instead of just some of the time to compensate for the increased swelling. I pretended not to be bothered by the nearly imperceptible signs that my nodules were more prominent and painful. Worse, I did what many have said is impossible for lipedema patients—I lost enough weight that the threat of infection from loose skin began to darken my door.
And that is how, after unearthing my earlier research on aggressive surgical treatment options, I arrive to you now, writing this essay with swollen, post-hospital hands and four limbs wrapped in ACE bandages. Of course, it wasn’t that simple, especially since my surgery was delayed for over a year while I had a series of varicose vein treatments (thanks, genetics!), but this surgery is a step on the path toward a more transformative approach to treating my lipedema.
In these early post-op days, I do not recognize the breezy space between my elbow and my waist. It feels cold and foreign, like I’ve walked in on another couple’s inside joke.
Whenever I watch a wedding-themed reality show, I am deeply puzzled by the women in white dresses and their mothers who cry alongside them in front of the giant mirrors. “I’ve been waiting my whole life for this moment,” they sigh. Their breathless wonder at this moment rooted in childhood fantasy is equally foreign to me. I never imagined my dream wedding, even when my sister’s Barbie collection offered some inspiration. The central preoccupation of my adolescent daydreams was a surgeon who might whisk me away to a new body. I didn’t know if such a thing was possible, but it didn’t stop me from pinching back my arm long enough to believe that this future could come true. I played in the three-way mirrors like the brides, too, twisting to find the angle between the seams that would elongate my legs and make them look normal.
Then, one day, I arrived in a reality where a surgeon did exactly what I imagined he could do. At my first post-op appointment, he proudly told me that he removed almost 11 pounds of excess skin and diseased fat from my arms and legs. Before I could process this information, he waved his phone at me and there it was—a picture of strips and piles of what used to be my body splayed out like so much evidence in a drug bust press release. I feel guilty and thrilled, too swollen to notice much of a difference yet except at the elbows.
I’ve been waiting my whole life for this moment.
But I shouldn’t have had to. Somewhere in the swirl of mixed emotions following a big life change, I am angry, vowing to avenge the little girl who knew that something was wrong with her. She never thought that wrongness was a disease, but she knew enough about good bodies and bad bodies to know that it was a waste of time to imagine the day she would be admired in front of the big wedding dress mirrors. It’s a cultural rage, a rage against medicalization of bodies, against media’s lies, against any kind of system that decides that a body can be good or bad.
When I saw those maligned parts of myself, detached and bloodless on an operating room table, I wondered what the future holds for what’s left of this body. After my second surgery and treatment is complete, will I be able to dodge lymphedema’s hateful grasp? Will I put too much pressure on myself to put this body to good use, to prove that I’m a good investment? Who will I be when no one can see what’s wrong with me?
But I’m getting ahead of myself. Let’s start with one brand new day at a time, like always.
The Quixotic is an irregular publication by Kate Herald about impossible dreams and how to find them. Mostly memoir, some navel-gazing. Thanks for spending part of your day here.