My voluptuous pear shape is common among the women in my family. Our trademark big thighs and wide hips appeared early on my adolescent body, though, and worried my parents, who had also questioned doctors as to how a toddler could have cellulite.
“If she just loses weight, it’ll go away.” That was the reverberating collective opinion of the medical community as I attempted WeightWatchers, Herbalife, summer fat camp and numerous other diets, all by the time I entered puberty, none with lasting results.
I entered my teens determined to “fit in.” I pushed myself to keep up with the stride of my friends, not sway too much or walk too heavily. Determined not to be that fat kid. I danced and exercised for hours on end at home, to the annoyance of my mother, whose room was beneath mine.
As the years progressed, however, I began experiencing pain. It was a pain that, by my teens, I had become accustomed to pushing to the back of my mind to avoid embarrassment. During high school, however, it became excruciating.
When I finally took this to my doctor, he responded that my body was carrying extra weight “like a backpack” and that if I lost it, the pain would go away. Though I felt like the doctor didn’t take the time to properly evaluate my condition, I attempted fad diets, resulting in more weight gain than loss.
By college and early adulthood, I had given up hope and became determined to be successful despite my weight. I overexerted myself in an attempt to prove that fat people weren’t lazy. I rarely ate sweets, shunned bread and skipped meals religiously. I was obsessed with not letting the world see me “acting fat.” I refused to mention my pain.
“Grin and bear it” became my battle cry. On the outside, I was successfully wearing the look of happiness, but internally I was living in misery, afraid to tell anyone how bad the pain was or how tired and heavy my body felt. I knew what their response would be: “If you’d just lose weight, it’ll go away.”
“I rarely ate sweets, shunned bread and skipped meals religiously. I was obsessed with not letting the world see me ‘acting fat.’ I refused to mention my pain.”
They didn’t understand. They couldn’t. This fat was different. This fat was painful, and it wasn’t responding to diet or exercise.
Frustrated and now with decreasing mobility, I started quietly searching the internet for answers. I knew I couldn’t be the only person to ever experience this. I needed help, and the general medical community offered very little more than judgment. At times, what they offered felt more like an insult than help:
“You are a pretty girl. You should lose weight and get your education and make something out of yourself.” (I have three degrees.)
“Nothing is wrong with you other than you are morbidly obese. You need to eat just a small amount of lettuce and half of a boiled egg with no dressing for all of your meals.”
“I know that you came in here for a UTI, but I came down to talk to you about losing weight.”
These are a few of the things said to me by the medical community as I searched for answers to my pain. It was typical for doctors to scoff at my attempts to explain how diets affected my body. Desperate, I took the advice of medical professionals and opted for weight loss surgery. The result of that was weight loss only in my upper body. My lower body continued to get larger, and my mobility continued to decline.
I was depleted. My last resort had failed. It was getting exceedingly difficult to function in life. Driving became hazardous, work was near impossible, and the pain permeated every part of my life, even sleep. That’s when a doctor finally agreed that it might be lymphedema that was affecting my limbs.
Lymphedema is swelling that occurs due to either a blockage or an overload in the lymphatic system, causing lymphatic fluid to accumulate in certain areas. This diagnosis was only the beginning of understanding what my body was experiencing, and it came too late in my journey.
One month into lymphedema treatment, I lost complete mobility, and have been working to regain it ever since. However, this was the beginning of me getting the answers that I truly needed. I was blessed to meet a few specialized doctors and therapists who were able to immediately diagnose my condition accurately. It was lipedema.
“Finally, a diagnosis. Finally, hope. Finally, not feeling like the doctor is looking at me with scathing judgment and ridicule.”
According to The Lipedema Foundation, “Lipedema is a chronic medical condition characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms. A common but underrecognized disorder, Lipedema may cause pain, swelling, and easy bruising. It may be accompanied by an unusual texture within the fat that can feel like rice, peas, or walnuts beneath the surface of the skin. The intensity of pain may range from none to severe, and its frequency may be constant, come and go, or only occur when the fat is pushed on. Limited public awareness of Lipedema, coupled with few research-backed treatments, can lead to exacerbation of symptoms as well as physical and emotional distress. Common symptoms include fatigue, muscle pain, or easy bruising.”
Finally, a diagnosis. Finally, hope. Finally, not feeling like the doctor is looking at me with scathing judgment and ridicule. Someone understood that losing weight wasn’t going to simply make the pain go away and that my fat wasn’t normal.
They understood that I had been through a lot just to get a diagnosis, and they helped me learn how to care for my lipedema body. More specifically, in my case, lipo-lymphedema, or lipedema that has progressed to the point of affecting your lymph system as well. It was late, but it’s not ever too late to initiate positive changes.
I now know lipedema has been shown to be resistant to dietary and exercise interventions. And while research suggests bariatric surgery may result in a reduction of total fat mass, this loss of mass is less likely to reduce volume in lipedema-affected areas or ease other symptoms such as pain.
I began learning techniques to help my lymphatic system. Certain foods and exercises affect my body more positively than others. I learned that certain activities cause my body greater stress than others. I am learning to take care of my lipedema body overall, instead of just focusing on weight loss.
But what about the rest? If I “just lose weight,” will the emotional damage go away?
Shedding the internal critic has been as hard as it is to get rid of an addiction. I beat myself up for every “cheat day,” every day that I don’t make it to the gym, every time my stamina won’t endure as long as a smaller person. I have to intentionally change the internal dialogue and remind myself that I am a human who is combating a medical condition.
Instead of losing weight, I focus on dealing with lipedema. I also focus on connecting with others who are treating or suffering from the same condition. This has resulted in the most sustainable reduction in my weight yet. But the result that mattered the most was finally gaining hope.