When I started rapidly gaining weight, doctors told me to diet. I was suffering from lipedema.
Esther Hollander had pain and decreased mobility beginning in 2020.
Her doctors told her the symptoms were related to obesity.
Hollander was later diagnosed with lipedema and needed surgery.
This as-told-to essay is based on a conversation with Esther Hollander. It has been edited for length and clarity.
I've struggled with my weight my whole life. I've been over 300 pounds and, at one point, lost 170 pounds before regaining a lot of it. But when I started gaining weight in the spring of 2020, I knew something was different.
The weight gain was concentrated in my legs. I felt like I was walking around with bags of bricks attached to me. I had no energy and lots of pain. Something was alarmingly wrong. Soon, I couldn't walk around the block without taking a break — which made doing my job as a personal trainer very difficult.
When I went to a doctor, they suggested that my pain was related to my obesity. I was fuming. In addition to working for years as a trainer, I've been many different weights, gaining and losing. My doctor ignored my lived experience, which was screaming that something was medically wrong.
I was diagnosed with lipedema, a condition that causes painful fat nodules
Luckily, I've learned to speak with doctors and advocate for myself. After seeing specialists, I was diagnosed with lipedema, a condition that causes painful fat deposits to grow beneath the skin. Getting a diagnosis was a relief beyond belief. I had been craving just a word — a hint about what was going on with my body. Now, I had it.
I started researching lipedema. I tried non-invasive treatments, including physical therapy. I learned about wearing compression stockings to improve circulation and help the lymphatic system do its job, draining fluids away from our tissues. I continued to exercise as much as I could.
I spent more than $50,000 out of pocket traveling for surgery
After talking with other lipedema patients, I realized I needed surgery. The surgical techniques for lipedema are the same as for some cosmetic surgeries, including liposuction and tummy tuck. The surgeries are meant to remove fat, but with lipedema, the focus is on regaining mobility and reducing pain — not looking a certain way.
I wanted a surgeon who was familiar with my chronic medical condition. That was challenging enough, and some surgeons wouldn't operate because of my body size and the severity of my lipedema. A doctor recommended Jaime Schwartz, who had helped develop the US standards of care for lipedema.
I knew I wanted Dr. Schwartz to do my surgeries, but I was in New Jersey, and he was in California. My insurance covered the surgeries, which were medically necessary, but I've spent more than $50,000 out of pocket traveling to the West Coast to get this medical care. My husband and I pulled from our retirement savings to afford this surgery that would allow me to regain control of my life.
I've realized I need to ditch the shame
So far, I've had three surgeries. The first addressed my pannus, or apron belly. It weighed about 15 pounds, hanging down toward my knees. It was causing skin infections, ruining my posture, and causing lots of pain. The two other operations removed painful nodules of fat in my legs.
In addition to the physical pain from lipedema, I've dealt with the emotional consequences. As a woman with a big body, I've fought so hard to embrace the body I'm in. Just when I was making real progress with that, this diagnosis came, and my body changed again, piling more judgments on me.
I've decided to ditch that shame. Now, when I walk into the gym to meet new personal training clients, I no longer worry about what they'll think. Like my size, lipedema is part of me. I'm a large woman, and I have a medical condition, but I'm here to help people.
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