I was at the pool last night swimming laps and loving every stroke. The water was warm and the pool was nearly empty. The sun sparkled on the water and reminded me of the ocean. After an hour and 20 minutes, I climbed out and reclined luxuriously on a deck chair taking in the beautiful evening.
I had been observing my food intake a little more than usual, so I felt lighter and more energetic. It was a good feeling to be working towards better health after the time-consuming (and exhausting) year I had had at work. I had no idea, though, if my eating was changing my body shape. I figured I would take a picture in the dressing room on the way out. If my body was healing, it would show. If not, I would have to adjust my meals.
I snapped a picture in the mirror in my swimsuit to compare to one I had taken just a month before. I looked at the picture and could see changes already, but when I put it side-by-side with the older shot, my heart fell. My hips and thighs appeared somehow larger than before I started eating a little less carbohydrates and a little more fat!
I sat down on a bench, my swimsuit still damp, and immediately reached out to my online support group. I posted both pictures in the hopes that someone could tell me what I might be doing wrong (and right!) so that I could adjust my eating plan accordingly.
While most people claimed enthusiastically that I had lost weight, while many other people said that they were sure that I have lipedema. I have never heard of lipedema before, and so I dismissed it until more than 25 women with the condition urged me to learn more.
I immediately set out to research the condition, and it was apparent that I had nearly all of the most common symptoms, which I will discuss below. I messaged an endocrinologist that I know. He asked me to forward him the pictures, and within an hour he said, “I am 95% sure you have lipedema. No, I am sure you do. Type 2. Stage 2.”
I cried, and I cried.
Lipidema, I had read, is a chronic, progressive condition that causes abnormal fat stores to build up in different parts of the body, most commonly the legs. The fat stores cannot be reduced through dieting because of the way they bind to the fibers in the body. As the disease progresses, the fat deposits hamper mobility. Many women (men rarely suffer from lipedema) end up with major mobility issues as the condition worsens, including becoming wheelchair bound. (I have learned that I am especially at risk for future mobility issues because I am incredibly flexible.)
Currently, there is no real treatment for lipedema. A special type of liposuction is the most promising treatment method at present, but the surgery is around $20,000 and is not covered by insurance. In addition, few doctors in the United States perform the procedure or even understand the disease. Compression stockings, pumps, and massages temporarily reduce pain and swelling, but the tissue returns to its former size within hours.
As I continued to read about the condition, my heart began to hurt. I was crying convulsively. At that point it was not about the grim prognosis. Instead, it was about the way my body will one day look. My legs are not my most flattering feature at present. (If you do a search for stage 2 lipedema, you will understand.) Who knows what they will look like in another decade?
But those tears (and the one I feel welling inside me now) are not about vanity, even though I am sure it seems that way. You see, after battling Binge Eating Disorder and body dysmorphic disorder for 33 years, this summer is the first time I have actually felt happy in my own skin. All summer long I have been wearing skirts and dresses, which I haven’t done in many years. I have been playing with make up and nail polish. I have been swimming laps and taking walks. I found a lovely lavender oil that I use on my skin every night. I had finally started loving the skin I am in, and now, just three months later, I feel that all that I have come to love about me will be ruined by this horrible disease that causes pain and bruising at touch, fatigue, and immune issues, just to name a few.
I am usually an incredibly optimistic person (hence the blog name), but this diagnosis feels bigger and more cruel than anything I have dealt with in many years. I would like to say that I will fight the good fight. I would like to say that I am ready to do battle. But both of those would be a lie. I am tired. Tired of going head to head with my own body. Tired of challenging Polycystic Ovarian Syndrome to a duel. Tired of wrestling with an eating disorder. Tired of fending off mental health challenges.
Last night, I considered suicide. I considered it long enough to draft a goodbye script for a digital story. But just as my thoughts were about to climb a cliff of no return, my son woke up and called my name. I went to him, drying my eyes, trying to construct a fake smile. I snuggled up next to him on his bed, and he put his arms around me, murmuring, “Soft Mama,” and I cried harder.
If you want to learn more about my journey, including what it was like to find recovery from Binge Eating Disorder, please check out my book below.