by Kayla Koehn
A patient of Dr. David Amron recounts her personal experience with lipedema:
After puberty hit in eighth grade, I began to notice changes in my body, as all teenagers do. However, it wasn’t the normal hair growth and hormones. I noticed my legs were shaped very differently than my peers. Instead of having normal curves to them, they looked column-like, and were heavy, like tree trunks. I started wearing longer and longer shorts until my friend Michael asked me one day, “Kayla, what’s wrong with your legs?” I looked down and saw pasty, white, scratched up elephant legs under my red and black plaid cut-offs, instantly wishing I could run off and cover them up with four layers of long socks and pants. My legs were ugly – and even my friends weren’t afraid to tell me.
Immediately after, I stopped wearing shorts unless I was swimming. Then, I stopped swimming. Then, I stopped showing my legs altogether, even in the privacy of my home. I pretended as if they weren’t a part of me; they just helped me walk from point A to point B. These large limbs on my body were simply tools in my eyes. And for ten long years, I have not worn shorts in public.
During these years, I also participated in all the diets you could imagine: Atkins, Weight Watchers, Dairy-Free, Gluten-Free, Meat-Free, Paleo…the list goes on and on. I ran 5k races, I did workout videos, I went to gyms, and I worked hard. I even saved money for a year to hire a personal trainer who kicked my butt for three months. At one point, he sat down with me during a session and said, “Kayla, you are writing down what you’re eating, you’re in here 2-3 times a week, you’re doing everything right, and you should be losing weight like crazy right now. What is going on?” I sat with him and cried. “I don’t know!” I told him. “I don’t know.”
Not having control over what your body does or doesn’t do, when science says it should be changing with your actions, can be extraordinarily disheartening. At some point, you give up – which is exactly what I did. I made my peace with never swimming again, and even moved to a cold state for an excuse to wear pants every day.
A few months after moving to Colorado, my mom called to tell me about a short news special she watched while getting ready for work. While watching the news, she saw legs that looked just like mine plastered across the TV screen. I began doing my own research and had a consultation with Dr. David Amron shortly after, during which he diagnosed me with late stage one of Lipedema.
For those of you who have never heard of Lipedema, it is a fat disorder caused by my lymphatic system’s inability to drain fluid properly. This creates abnormal fat deposits to accumulate in the legs, and in my case also my arms. This Lipedemic fat cannot be dieted, exercised, or even starved away, which makes sense now when I look back at my many failed attempts to lose weight in these lippy areas. If not managed or treated, my legs could swell to the point of immobility. As a twenty-something, this is a scary realization.
Some time after my diagnosis, I was reading the story of Adam and Eve in my Bible and participating in the spiritual practice of Lectio Divina. This requires one to read, meditate, pray, and contemplate on a particular passage of Scripture. In Genesis, after Adam and Eve ate the fruit from the tree of life, they realized they were naked and proceeded to cover themselves with fig leaves:
“…They heard the sound of the Lord God walking in the garden…and the man and his wife hid themselves…among the trees of the garden. But the Lord God called to the man and said to him, ‘Where are you?’ And he said, ‘I heard the sound of you in the garden, and I was afraid, because I was naked, and I hid myself.’ [The Lord God] said, ‘Who told you that you were naked?’” (ESV)
Who told me I was naked? Who told me my legs were not to be seen? Who told me to put pants on? I was thirteen years old. I should have been skipping through my pre-teens, going to concerts, and figuring out how to navigate puberty and menstruation. Instead, I wasted countless hours hating my body, treating it with disrespect, and refused to be naked and exposed. My legs became shameful things that needed to be covered up to avoid the judgment and ridicule of my peers. I have avoided a beautiful part of my body for ten years. I have missed out on birthday parties, lake trips, and beach vacations. I have chosen maxi skirts and jeans over patterned shorts and summer dresses. I am in my early twenties, and I still throw away invites to pool gatherings for fear of having to explain why I am wearing jeans and don’t own a bathing suit.
And I’m not alone. Once women are in stages three and four of Lipedema, they are in excruciating pain and facing immobility. Had I not been made aware of Lipedema now, this could have been my future, and it is a hard reality for many, many women. We cannot be living under fig leaves anymore. We cannot continue to cover ourselves up for fear of ridicule. There is a freedom to the nakedness. There is a freedom in being able to wear shorts, to feel safe walking around in public without fear of judgment. Unfortunately, there are thousands of doctors who are misdiagnosing women, marking their weight gain as mere obesity. No wonder we are covering ourselves up and living in shame.
I am so blessed to have found out about my Lipedema while in stage one. I am so blessed to have been treated by Dr. Amron to have my Lipedema removed. I am so blessed to know that I don’t have to hide anymore. If you or someone you know might be struggling with Lipedema, I encourage you to do the research, tell your doctor about it, and tell your story. And if someone tells you to cover up, don’t listen. Embrace your nakedness – it’s beautiful.
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