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Lipedema Awareness Month: Overcoming Stigmas and Loving Life

Published: 6 June, 2024
Cara Cruz

Four years after learning she had lymphedema, Cara Cruz received a surprising diagnosis — she also had lipedema, commonly referred to as “the disease they call fat.” And because of that, her physical therapist mentioned that she was going to have difficulty losing weight.

At the time, Cruz didn’t even know what lipedema was. But the new diagnosis set her on a path of frustration, surgeries, and taking her lipedema journey public by becoming a body positivity influencer. She shares her story for June’s Lipedema Awareness Month.

What is Lipedema?

There’s a difference between lipedema vs. lymphedema. Estimated to affect 350 million women worldwide, lipedema is a chronic condition that causes fat to build up in the lower body and sometimes the arms.

Cruz’s physical therapist told her that lipedema fat typically doesn’t respond to diet and exercise. Although symptoms can be managed through conservative treatments like compression therapy, the only way to get rid of lipedema fat is surgery. At the time of Cruz’s diagnosis, her insurance didn’t cover lipedema surgery because it was considered a cosmetic procedure.

The Lipedema Journey Begins

“I went home and did a lot of internet searching, but there wasn’t much information for someone as late stage as I was,” Cruz says. “Everything I came up with was for people in stage one or stage two lipedema.” But Cruz was already in stage three to four.

The conventional advice was to be more active and eat less to lose weight. But the condition typically doesn’t respond to diet or exercise, and Cruz didn’t know what else to do.

The Frustration of Useless Advice

Cruz wanted to be more active, but at her size, it was difficult. For example, the tongues of tennis shoes rubbed the fronts of her legs raw, making walking incredibly painful. “I’d be bleeding and leaking fluid, putting me at risk for cellulitis and infections,” she says.

Dieting didn’t work either and Cruz was already undereating much of the time anyway. She was too busy working multiple jobs, raising her young son, and caring for her ill father. Undiagnosed celiac disease also meant many foods made her sick.

Lipedema Stigma and Judgement

“There’s a lot of judgment when you’re a certain size, like, ‘Oh, you’re just lazy,’” Cruz says. She remembers leaning on the grocery store checkout counter, exhausted after a long day of babysitting, taking care of her son and father, and working. She felt people’s silent judgment.

“I got looks from people,” she says. “But they didn’t know everything I’d done that day. I’d get judgmental looks about the groceries in my cart, too.” Like many caregivers, she didn’t have time to feel sorry for herself.

The Dare That Changed Everything

As Cruz explored lipedema treatments and continued to manage lymphedema, a former boyfriend dared her to start an Instagram account to share her story. He thought she could get a lot of followers, and she agreed to do it just to prove him wrong.

“I didn’t start on Instagram with the intention of lymphedema or lipedema awareness,” she says. “I didn’t even really show my compression garments at first.” But a couple of months later, in a moment of “redheaded sass,” she decided she wouldn’t hide the realities of lipedema.

No Holding Back

Cruz did a post where she showed her compression garments. She started talking openly about her condition and, to her surprise, people began responding.

Followers particularly appreciated how Cruz dressed with her condition. “I started showcasing my fashion, showing how I pair this dress with those shoes, or add an extra hole to the buckle of my sandals,” she says.

From Hundreds to Thousands of Followers

Everything stepped up a notch when Barcroft TV, an alternative news agency, contacted Cruz about featuring her in a short documentary. The documentary included filming her at a swimming party with a body-positive group and interviewing her at home. It has over 3.2 million views on YouTube.

After the documentary dropped, Cruz experienced a huge surge in Instagram attention. She gained many thousands of followers on her @palegingerpear account, leading to more interviews and features, including a US Weekly story.

Lipedema Reduction Surgery and More Stigmas

Cruz knew she wanted to have surgery to remove fat nodules, stop the pain, and regain mobility. But it was a challenge to find a surgeon who was the right fit and familiar with lipedema. Dr. Jaime Schwartz, a plastic surgeon, turned out to be Cruz’s match and an important person in her journey. Over several years, Cruz had seven lipedema-related surgeries.

Even though her surgeries were medically necessary, Cruz still faced stigmas. Some people thought she was taking “the easy way out” or just doing the procedures for cosmetic reasons. However, the surgeries have improved her life immensely by enabling her to move more easily and be more active.

Daily Maintenance

Cruz says that even after lipedema surgeries, she still has to do plenty of self-maintenance. She wears medical-grade compression garments daily for both her lymphedema and lipedema. Cruz also keeps lymph moving by dry brushing, rebounding, and using her Lympha Press Optimal Plus pump.

“I wish surgery was an easy way out, that it meant I was done dealing with lipedema,” she says. “But it’s a way of life now. And I feel better because of it.”

Body Positivity with Lipedema

Known for her vivid tattoos of Disney and Muppets characters, Cruz’s tattoos helped her embrace all parts of her body. She has regular photo sessions, including boudoir shoots, which also help Cruz cultivate love for her body.

Cruz posts many before-and-after-surgery photos and pictures where she poses confidently in swimsuits or her latest fashions. She also blogs about her experiences on her website and regularly appears as a panelist on the monthly Lympha Press Lipedema Patient Roundtable. She’s discovered that by simply being herself online, she inspires others to do the same.

Advice from @PaleGingerPear

Cruz offers tips and reassurance to others with lipedema, especially people with new lipedema diagnoses:

  • You’re not crazy: Lipedema is a real condition, and it’s not your fault.
  • You’re not alone: Lipedema is a common condition. Cruz says that one in nine people has it.
  • Find your people: The lipedema community is large. Don’t give up if you don’t connect with the first few people you meet.
  • Find the right provider: If your primary care provider isn’t familiar with lipedema, find a different doctor, if possible.

Honoring the Journey and Loving Life

Cruz says that it’s likely her mother had lipedema, though she was never diagnosed. “I believe my mom had it as she would always complain about her thighs aching and being lumpy. I also found out a few surgeries into my journey that my Grandma Ruby, my mom’s mom, had a lipedema diagnosis.” She hopes that lipedema will be widely understood and diagnosed much earlier by the time she has grandchildren.

But Cruz has no regrets about her own journey. “I love my life, and I love where I’m at in it,” she says. “Lipedema doesn’t have to take over everything. You are worthy of friendships, love, and a fun life.”

For answers to commonly asked questions, watch the video Lipedema Explained: What You Need to Know. Download an article about the standard of care for lipedema in the U.S.

Please note, as with all treatment protocols, the decision to undergo surgery should be made in partnership with your healthcare provider.

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