I remember the first time I experienced the butterfly stretch. It was 7th grade gym class. I was in the center of the expansive gym floor, separated from other kids by about 3 or 4 feet. I pulled my toes close to my body, while my knees floated. I can still remember how it felt, my muscles gently stretched and pulled as my knees bobbed softly up and down from the shiny hardwood surface.
It felt good. I enjoyed the solitude of being in my body, something I had rarely experienced. As a child of abuse, I left my body often. As a girl already fatter than was socially acceptable, I was well practiced at hiding, insecurity and body shame. This memory is vivid, however. My first time enjoying what a gentle push on my body could make me feel. I was flexible enough to bring my heels in tightly against my inner thighs. I was successful at something physical, and it felt good to me. From that day, I would sporadically sit this way and feel proud of what my body could do. It could stretch. I could lean down over my folded butterfly knees and feel my gluts stretch and lengthen. I was as capable as my peers at this and there was no cause for shame in this one gym class about stretching.
Can you imagine how weirdly sad it is for me to learn that hyper-mobility is typical in women with lipedema?
My whole life, I have wished that there was an adult human that would have encouraged me to move my body. The childhood abuse and the little bit of excess weight on my medium frame had taught me to hide myself. If someone would have nurtured that small new awareness of what my body could do, I used to believe I might have avoided living my whole life as a fat person. It wasn't until my early 20’s that I was able to do that for myself.
My first foray into regular intentional exercise was a circuit training gym where a new friend of mine worked. I dropped weight and my shape changed quickly. I was learning how strong my body really is. However, I moved to a new state for work just weeks later. In my new state, I found a gym after settling in, and once again, I was fairly regular in my attendance. I loved being a part of a group working out. This weight training plus cardio class later led me to a hip hop dance class and even a community running class. My personal treat after all these fun work outs was a dip in the gym’s pool. Imagine my great pleasure in learning how much I could love moving my body.
As an adult, I’ve had special windows of success with regular exercise and for me the accompanying weight loss and body changes. Yet, I have never been thin —even at my most fit, my most strong. I always assumed that was because I just had to “keep at it longer”. But too often, life would complicate that for me. Depression has also been a major player in my life story. I have been to therapy, and recently began again. I've ended relationships that were harmful or even just draining. I’ve nurtured spirituality and community and tried meds from time to time. I do take my well being very seriously. But when I am depressed, my weight goes up. When I am depressed, I feel the need to cocoon, to lay down more, to move slower. For all these years, I thought that alone was why, no matter how much I had learned that I love to move my body, it still grows fatter when I am sad. My dad died. I was devastated. I was in profound grief. I gained 30 pounds in one year. 20 of that was the first 3 months, the last 10 was while I was actively trying to lose the first 20.
I now know that stress can trigger lipedema. Stress like terrible grief and depression. I’m so sorry for my 29 year old self. Poor her, she was doing her best and was stupefied by why she was failing.
Today, ten years later, at 39, I’m a spouse and parent of two beautiful children. I’m very fat and in a significant amount of pain. I didn't know that my pregnancies (just 21 months apart) would mean 110 more pounds on my medium frame. I did know I was susceptible to postpartum depression, which gripped me hard after my second child, yet still was not fully recognized by me or anyone close to me until my baby was 3. I am a damn good parent and though depressed, I managed to meet the needs of my kids, try to eek out time for me, even manage to have semi regular dates and sex with my husband.
Oh, lipedema, had I known. How much suffering I could have avoided. Oh, Kathryn…I’m so sorry, you felt so helpless while your body changed. I know you did your best.
I became a 300 pound woman with a baby and a toddler, as my children grew…so did I. Ask me how many times I made it to the gym? Ask me if I ever had a personal trainer. Ask me how many fucking articles I read. Ask me about my exploring Fat Acceptance and Fat Activism because, I still want and expect to be treated well no matter my size. Ask me what it felt like to hear my 5 year old crying days after I volunteered in his kindergarten class, saying his peers didn't like me because I’m fat. Do you know how I vowed to myself to get my weight under control before my boy started school, for this exact reason? To my child, this darling boy, I am the sun and the moon. He loves me with the kind of ardent devotion I didn't know existed in the world. Can you imagine how it felt to keep my voice even as I said: “All the people who know me, love me. Your best friend likes me. People come in all shapes and sizes and we need to treat everyone with kindness.” He replied, face in pillow, still crying while his sister slept, “But no one else has a mom as fat as you.” He said fat as a description word, not an accusation. Before that day, I believe he's never heard the word fat spoken with distain. “I know, Honey,” I said. “I know”.
I was diagnosed with lipedema 8 weeks ago. I went from being a fat lady trying hard to find the perfect scenario of rest and self acceptance and exercise and nutrition to finally see results again, to a woman with a chronic illness. A chronic illness that makes you fat. A chronic illness that hurts.
I don’t have the heart right now to paste in the webMD description. You have google. I’m just walking myself back through my life, following threads of pain and shame and setbacks and some victories followed by more setbacks. Seeing it was lipedema the whole damn time.