- You Mean It’s Not My Fault:Learning about Lipedema, a Fat Disorder
“As a surgeon there is nothing more I can do for you. You need to lose 75 pounds before I can even consider repairing the damage done.” Implied and not directly stated, “… Because it’s your fault.” I sat listening, dumbfounded. I was at one of the top teaching hospitals in the country, face to face with a respected Harvard Medical School trained surgeon who came highly recommended.
I had seemingly irreversible damage that was leading to permanent immobility. I was experiencing excessive and uncontrollable swelling in my extremities. I was in unrelenting pain that prevented me from sleeping through the night.
The surgeon looked down at the floor avoiding my gaze and—after never before mentioning weight as a possible contraindication to surgery during any of our interactions associated with five surgeries, in over two years, including at least 25 consultations, pre-op, post-op, or follow-up visits stated—in essence, “I can’t help you. You are too fat. It’s your fault.” Not until now, this moment, a couple of months after “the-surgery-gone-wrong-that-ended-in-terrible-complications,” I was being told that it was my fault.
He then looked down at his pager that had conveniently buzzed within minutes after he delivered this news, and then walked out of the examining room leaving me to fend for myself in dealing with serious and life-changing complications. Susan1*, his Nurse Practitioner, printed out and handed me a standard listing of BMI calculations, marched me into the common hallway to weigh me, pointed out my BMI >30, reinforced the message that he would do nothing to remedy this horrific situation unless I lost 75 pounds, and then sent me on my way.
I stood outside the hospital in shock. This just wasn’t happening, and it couldn’t be happening to me. I had grown to trust this surgeon, and I was struggling to comprehend what had just happened. As the shock wore off, I reengaged in several failed attempts to get help from him. He seemed to have convinced himself that the reason the surgery had gone awry was because of my excess weight, and not because, as I later learned, I had been misdiagnosed and the procedure, as it was performed, was far too aggressive. My health condition was deteriorating and it appeared as if weight was being scapegoated for the complications.
If a solution was to be found, I was going to have to find it. After many months of research, I discovered that I have lipedema, an unrecognized [End Page E6] and generally misdiagnosed hereditary, genetically-based fat disorder. I had always had lipedema, which in my case seems to have been triggered at least since puberty. There are an estimated 17 million women in the USA alone who have lipedema, unrecognized or misdiagnosed.
I, like most other women in America, knew that weight was a personal choice, and fat is a result of eating too much. Or was it? This ingrained and culturally accepted structure of knowledge began to disintegrate. I then asked the question, if this disease of lipedema is a fat disorder—and I had been to many, many doctors in my 63 years—why was it never identified? Why was I left to struggle in a constant battle trying to accomplish the impossible? I then learned about and named “anti-fat bias” and began to unravel the answers.
According to Karen L. Herbst, Ph.D., M.D., endocrinologist and expert on fat disorders, lipedema (lipoedema in Europe) is an inherited genetic disease, affecting at least 11% of women of all sizes, from the extremely thin to the morbidly obese, resulting in localized fat that is bilateral, symmetrical and usually from the waist to just above the ankles. It can also affect the upper arms. Unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise. It is not uncommon for the comorbidity of overweight or obesity to accompany lipedema. Allen and Hines, physicians at the Mayo Clinic, first named Lipedema in 1940.