My voluptuous pear shape is common among the women in my family. However, our typically large thighs and wide hips showed up early on in my teenage body and worried my parents, who had also been consulting doctors about how a toddler could have cellulite.
“If she just starts to lose weight, it’ll go away.” That was the resounding collective opinion of the medical community as I tried WeightWatchers, Herbalife, Summer Fat Camp, and numerous other diets, all up until I hit puberty, but none for good results.
As a teenager, I was determined to fit in. I struggled to keep up with my friends’ steps, not swaying too much or walking too heavily. Determined not to be The fat kid. I danced and trained for hours at home, to the annoyance of my mother, whose room was below mine.
However, over the years I began to feel pain. It was a pain that, as a teenager, I always preferred to ignore to avoid embarrassment. However, during high school, it became excruciating.
When I finally took it to my doctor, he replied that my body was carrying extra weight “like a backpack” and that the pain would go away if I lost it. Although I felt that the doctor had not taken the time to properly assess my condition, I tried dieting, which resulted in more weight gain than weight loss.
By college and early adulthood, I had given up hope and was determined to succeed despite my weight. I overworked myself to prove that fat people aren’t lazy. I seldom ate sweets, avoided bread, and skipped meals for religious reasons. I became obsessed with not letting the world see that I was acting “fat”. I refused to mention my pain.
“Grin and bear it” became my battle cry. On the outside I looked successful and happy, but on the inside I lived in misery and was afraid to tell anyone how bad the pain was or how tired and heavy my body felt. I knew what her response would be: “If you just lost weight, it would go away.”
“I seldom ate sweets, avoided bread, and skipped meals for religious reasons. I became obsessed with not letting the world see that I was acting “fat”. I refused to mention my pain.”
You didn’t get it. They couldn’t. This fat was different. This fat was painful and unresponsive to diet or exercise.
Frustrated and now less mobile, I quietly began searching the internet for answers. I knew I couldn’t be the only one who had ever experienced this. I needed help, and the general medical community offered little more than judgment. Sometimes what they offered felt more like an insult than help:
“You’re a pretty girl. You should lose weight, get your education and make something of yourself.” (I have three degrees.)
“There’s nothing wrong with you other than being morbidly obese. You only need to eat a small amount of salad and half a boiled egg with no dressing at all meals.”
“I know you came here with a urinary tract infection, but I came here to talk to you about losing weight.”
These are some of the things the medical community has told me as I searched for answers to my pain. It was typical for doctors to scoff at my attempts to explain how dieting affected my body. In desperation, I took the advice of medical professionals and decided to have weight loss surgery. The result was weight loss in the upper body only. My lower body kept getting bigger and my mobility kept decreasing.
I was exhausted. My last resort had failed. It became increasingly difficult to function in life. Driving became dangerous, work was nearly impossible, and the pain permeated every part of my life, even sleep. That’s when a doctor finally concluded that it might have been lymphedema affecting my limbs.
Lymphedema is swelling caused by a blockage or overload in the lymphatic system, causing lymphatic fluid to pool in certain areas. This diagnosis was just the beginning of understanding what my body was experiencing and it came too late in my journey.
I lost my full range of motion a month into starting lymphedema treatment and have been working to regain it ever since. However, this was the beginning of getting the answers I really needed. I was fortunate to meet some specialized doctors and therapists who were able to accurately diagnose my condition right away. It was lipedema.
“Finally a diagnosis. Finally hope. Finally I don’t feel like the doctor is looking at me with scathing judgment and mockery.”
Accordingly The Lipoedema Foundation“Lipoedema is a chronic condition characterized by a symmetrical accumulation of adipose tissue (fat) in the legs and arms. Lipedema is a common but under-recognized condition and can cause pain, swelling, and easy bruising. It may be accompanied by an unusual texture in the fat that can feel like rice, peas, or walnuts beneath the skin’s surface. The intensity of the pain can range from “none” to “severe,” and its frequency can be constant, come and go, or occur only when the fat is squeezed. Limited public awareness of lipedema coupled with few research-backed treatments can lead to worsening of symptoms and physical and emotional distress. Common symptoms are fatigue, muscle pain, or easy bruising.”
Finally a diagnosis. Finally hope. Finally I don’t feel like the doctor is looking at me with scathing judgment and mockery. Someone understood that losing weight wasn’t just going to make the pain go away and that my fat wasn’t normal.
They understood that I had been through a lot just for the diagnosis and they helped me learn how to take care of my lipedema body. More precisely, in my case it is lipo-lymphedema, or lipedema that has progressed to the point where it also affects your lymphatic system. It was late, but it’s never too late to start making positive changes.
I now know that lipedema has been shown to be resistant to dietary and exercise interventions. And while research suggests that bariatric surgery can result in a reduction in overall fat mass, this loss of mass is less likely to reduce volume in areas affected by lipedema or relieve other symptoms like pain.
I began learning techniques to support my lymphatic system. Certain foods and exercises have a more positive effect on my body than others. I’ve learned that certain activities put more strain on my body than others. I’m 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?
Getting rid of your inner critic was just as hard as getting rid of an addiction. I blame myself for every cheat day, every day I don’t make it to the gym, every time my stamina doesn’t last as long as a smaller person. I have to consciously change the internal dialogue and remind myself that I am a person struggling with an illness.
Instead of losing weight, I’m concentrating on treating the lipoedema. I also focus on Connect with others who are treating or suffering from the same illness. This has led to the most sustainable weight reduction to date. But the result that mattered most was that there was finally hope.
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