We throw around the phrase “I feel seen” a lot. But, today, I lived it.
Recently, I’ve been dealing with some health issues that started during the pandemic. A few months ago, my new physical therapist said to me, “Has anyone ever told you that you have lipedema?”
I had no idea what she was talking about. But, then I started reading.
The disease called “fat”
Lipedema is a genetic connective tissue disorder that affects the way (mostly women’s) bodies produce and distribute fat. Once the fat is stored, it doesn’t respond to diet and exercise. The only way to remove the sick fat is with surgery. The condition is painful. It’s progressive. And it can be debilitating if it’s not addressed.
I’ve battled my weight almost my entire life. I often joke that I’m a walking encyclopedia of calorie counts. I was taken to my first Weight Watchers meeting in fourth grade. During most of my senior year in high school, my weekday diet was a cup of coffee for breakfast, half of a bagel or an apple for lunch, and a salad for dinner. I went out for the tennis team and almost fainted on the court. I was too embarrassed to ever go back.
Even when I was successful with dieting and exercise, I always got to a point where I just couldn’t lose any more weight, especially in my lower body. At one point, I was walking 4+ miles most days, doing yoga, cycling (10 to 25 miles at a clip), and swimming regularly along with following Weight Watchers religiously, and I was gaining weight. The scale would inch back up until I gave up out of frustration.
One German study found that this condition affects one in 10 women. As I move through the world every day, I can see women around me who likely have it. My mother had it. Shortly before she died, she told me that there was something wrong with her legs. They had gotten so big, and she said they were heavy and felt like they had water in them. Her doctor told her to walk more. I told her that was probably a good idea. And I feel very bad about that now.
Searching for help
If you’re a person who carries more than a few extra pounds, you also know that every doctor visit ends up being about your weight. Hurt your shoulder? Lose some weight. Have a sinus infection? Lose some weight. While there is a “healthy at every size” movement in the medical community, surprisingly few doctors are actually part of that initiative.
Almost every day, I say terrible things to myself because of the shape of my body. And I cannot tell you how many terrible things have been said to me over the years for the same reason. People also have lots of well-intentioned suggestions. Diets. Fasting. Shakes. Gyms. New doctors. And while it’s true that an anti-inflammatory diet and exercise, along with compression and a handful of other interventions, can be helpful in managing the disease, they are not cures. A couple of years ago, I ended up doing two months of physical therapy after joining one of those franchise exercise facilities and hurting myself in an attempt to give it “one more try.” And, I’m finding, identifying a doctor who is more than vaguely familiar with lipedema, let alone understands it well, is a daunting task.
I live in the most densely populated state in the country, and the only doctor in the state who specialized in this condition retired three years ago. There are a handful of surgeons who are knowledgeable about lipedema in the entire country. One of them reportedly just raised the virtual consultation rate to $1,000 for one hour. Even in Europe, where they are much further along in diagnosis, awareness is painfully low. The first standard of care for lipedema in the U.S. was just published this year. So, when I saw the amazing and courageous Nicky Gregory in this clip today, I. Felt. Seen.
Be the change
I’ve joined lipedema groups that have thousands and thousands of members and which are growing daily. They pulse with pain, despair, and self-loathing. Societal messages, as well as well-meaning and not-so-well-meaning people, have beaten down these women—and it is all women—until it’s difficult for them to live their lives. Every shopping trip means stares and nasty comments. Every trip to a restaurant is an exercise in humiliation and worry about whether they’ll fit in the seat or endure someone’s cruelty. They don’t go to the beach. They don’t go to the park. They don’t go where people will be mean to them, which is basically everywhere. It’s heartbreaking.
That’s where awareness is important. We need to stop making people ashamed of their bodies. Mocking and insulting larger people is one of the last acceptable cruelties. Even some of my most progressive, inclusive friends think nothing of it. (I often write about diversity, equity, and inclusion issues. A recent piece I wrote about how offices can be more accommodating to fat people generated some of the worst hate mail I’ve ever gotten.) These attitudes are causing more people than you know to forego living their lives. It’s a change everyone can make for the better—starting now. Take a look at how you treat people whose bodies are bigger and how you allow them to be treated around you. Be the change. It’s time.
If you think you might have lipedema or want to know more about it, here are some resources:
https://lipedemaproject.org/
https://www.lipedema.org/
https://www.facebook.com/groups/285523148224306
Standard of care: https://pubmed.ncbi.nlm.nih.gov/34049453/
