Amber's Journey,  Lipedema

Amber’s Lipedema Story

I think it’s a little evident that my sister and I are part of the crew Queen sings about in “Fat Bottomed Girls”. We can’t deny it, nor would we even like to. Luckily for us, we were raised in a home that taught us to embrace our curves and to celebrate them. 

Now, the stories of Ariel and I are quite different from my mother’s.

I can’t speak for Ariel fully, but I do have my own account of living with lipedema and the mysteries and upsets that it posed before I had any awareness of it. 

I was really excited when my mother decided to make a blog about lipedema because I am a firm believer in both body-positive and not leaving my fellow ladies in the dark about what the heck is happening and ensuring that they know THEY ARE NOT ALONE. Because I know that feeling personally, of feeling like you’re living with a secret your whole life because you’re positive that you must be the only girl that has these abnormalities. After all, you don’t see them. And people don’t talk about them. Or at least they didn’t before. So I know that drill. And it sucks. It particularly sucks as a teenager and young woman, where unfortunately in those years you spend waaaaay too much time thinking about what you think other people are thinking about you. Ugh, exhausting! 

Okay, so I will get to it. It all started over a summer break. I left school a size double zero, little twig figure. That’s what Amber looked like. A petite little skin and bones 12-year old. And then summer break… and puberty happened. At the same time. It was an awesome summer break, let me tell you! 

I don’t mean to be graphic, but I don’t have any other way to describe this… It was like my ass (yes literally my ass) exploded overnight. I woke up one morning and looked in the mirror and was horrified to find a wild array of red lines covering the backs of my thighs and onto my butt. At first, I thought I had slept on a grill, which I obviously did not. I touched the back of my legs and could feel the raised and angry skin. I pulled the skin tighter and saw the red lines turn white. To my horror, I realized that I, a 12-year old kid, had stretch marks! As a pre-teen, you can imagine my distress about this right? I burst into hysterical tears. And promptly told… no one. 

Over a few short weeks, I went from a double 0 to a size 2 and I was no longer a stick-figure shape. I suddenly had an hourglass figure, thick thighs and for a 12-year old, a huge ass. And I had gotten my first period. The hormones were coursing and the meltdowns were plenty. But I only had them in private. I was so sure that I was a freak of nature that I said nothing to my sister or mother. Obviously my mother noticed the major changes in such a short period of time. She also had to buy me new clothes that fit, so for sure she noticed. However, she said nothing to me and did not draw my attention back to the wild physical changes that I was already so painfully aware of. There were no words to search in Google at that time and there was definitely no awareness of lipedema! I am sure that mom was just as bewildered as I was and probably chalked it up to “passing down her curvy genes” and so said nothing. 

My first day back at school was a nightmare. Might as well have been a literal nightmare where you are naked in the middle of class, that was about the level of horror I experienced going back to school. None of my other friends had sprouted into a backup dancer for Ludacris over summer break. My friends had started to get boobs and started their periods, sure. They also were experiencing the hormonal battle of acne, just as I was. But I looked around at my friends who had hardly changed and I looked at my own body’s transformation and honestly, not knowing anything about anything, I just thought I was different. And it made me feel alone and like there was something wrong with me. 

So my first day back, I tried to wear the loosest pants I had and a big t-shirt. And I walked into class feeling like I walked in naked. All the kids I hadn’t seen over summer break were definitely staring and a couple of the girls even called me out in front of people. It was mortifying! It’s funny that as an adult, many years later, we could talk openly and freely about all this stuff, that mom shared with me a similar experience of when she hit puberty and returning from summer break in a similar state. She went through everything I went through, and just like me, she didn’t understand it. 

After a while, I just got used to it. My sister and I were curvy and we had big thighs. Bigger than all our friends. And even though we were in just about every school sports team (soccer, football, basketball…), we rode our bikes to and from school EVERY day, we never missed a day of PE and also took martial arts and dance classes, we just stayed thick. I look back at my pictures from middle and high school and I laugh at myself for all the horrible things I thought about myself all the time during those years. I was in great shape! So was Ariel. But we were definitely thick and definitely curvy and neither of our butts got smaller over time… So that was cool. 

The thing was that neither of us had any understanding of why our bodies had changed so much after hitting puberty and why, no matter what we did, we never could get back the dainty and defined ankles or knees we once had. Or why we had to work so hard at keeping the fat off the back of our arms. I know for me personally, I hardly ever wore shorts after puberty. I was very self-conscious in skirts, dresses or a bathing suit. I would avoid bathing suits in public as much as humanly possible outside of my closest circle of friends. Between the stretch marks and the cellulite that was so stubborn, regardless of exercise or diet, I just wasn’t confident enough. I also didn’t understand why I looked so different. I didn’t see ankles, knees, thighs, and butts that looked like mine. Sometimes I thought I had some deformity that no one else had and I definitely didn’t want to talk about it because what if it was something really bad? Who wants to find out that kind of scary news? 

So what did I do? Covered up my arms and legs as much as humanly possible and tried to find clothes that hid my “triangle thighs”. My mom laughs at me for using this term, but I think it’s the perfect description. You know what I am talking about! That stubborn little shelf that hangs out on the outside of your thighs that gets very prominent when you gain weight and never goes away when you lose weight. Those suckers. I named them “triangle thighs” when I learned of lipedema and saw all the pictures of women out there who are just like me and know exactly what I am talking about. 

Like I said, this is my side of the story of living with lipedema. I didn’t go through even 1/10th of the journey my mother went through trying to figure it all out. My sister and I had to watch her go through doctor after doctor, procedure after procedure, tons of research and diets and this and that to finally find out what was actually happening. And after all this hell she went through, we finally discovered that it was indeed lipedema that Ariel and I had as well. Which answered a lot of questions for us! We just didn’t need to look as hard because our lipedema is not as severe or debilitating as what Mom went through.  

But talking to you straight from the viewpoint of a kid, teenager and then young woman in her 20s, living with something like lipedema isn’t something you want to do in the dark. Aside from the self-conscious aspect of feeling like you have a deformity of some kind, there’s the random other symptoms that also affected me. I didn’t have this until my 20s, but in my 20s I hit a wall where weight loss was very difficult, but weight gain… now that was easy! And mom already mentioned how much I love good food in the About Page.

My 20’s is where the random extra bits kicked in – the bruising over nothing all over my legs and sometimes arms, the random pains that would shoot through my thighs, the tenderness and sometimes very sharp pain I would experience if pressure were put on my thighs (such as holding my niece or nephew in my lap, my cat jumping onto my legs, etc.) and the knee pain that would show up every time my period was due. That’s the worst part for me actually, the rest I can deal with pretty well. The thigh pain with any pressure is not awesome, but pretty manageable. But the knee pain just sucks. It feels like growing pains and it’s hot, intense pain for sometimes 2-3 days in both knees. What the heck?

The other terrible part of this all is that not knowing what condition my body had, not knowing anything about lipedema, it  just created a vacuum for me! I had these very odd, problematic and painful situations with my body that I didn’t understand. And I didn’t want to talk about them because they seemed weird and honestly, non-sequitur. But when I would experience them, my mind would race off into dangerous places wondering if something more sinister was actually wrong with me physically. 

When my mom finally found out that what she had was lipedema, she had a sit-down with me and asked me a bunch of questions. They were weird questions to anyone who didn’t know what lipedema was, but they were the right questions. No one had ever asked me these before and I had never talked about them. But mom knew what to ask because she finally had all her mysteries solved. And she knew to ask them because, well she knows what her daughters look like. So she had reason to believe there might be more that we weren’t saying.

“Do you bruise easily and sometimes you don’t know how it happens? Especially on your thighs?”

“Do you ever get random pains in your legs? Like shooting pains?”

“Do your knees ever hurt and it seems very random? Like not from a workout or running or a sprain or anything like that. Do they ever just hurt?”

“Does it hurt when you put things on your legs? Like when you have your laptop on your thighs and you’re writing or if your husband touches you?”  Now, I apologize for being possibly TMI here, but this last question is so pertinent. I just remember it so clearly that that was exactly what she asked me. And it was so the right question! I remember immediately crying when she asked me that exact question. Because the answer was “YES! Sometimes it startles me when he rubs my legs or touches my thighs because it hurts and it’s weird and shocking and I don’t understand it and so it’s even more upsetting!” It’s not supposed to hurt when your husband touches you. Another reason that if you’re in the dark on what’s happening, that is a horrible thing to introvert on.

Anyways, as I said, pretty “random” questions. But all the right questions to finally answer the mysteries I had carried silently for years, too afraid to possibly learn of something far, far worse that might be wrong with me to speak up and try to find out what really was going on. 

I live a pretty fast-paced life. I am an executive, a wife, a sister, an aunt, a writer, a humanitarian, an artist and a photographer on the side. I work 60 hours a week and I love what I do. I love good food, but I am also conscious of what I put into my body to keep it in shape enough for it to do all the things I love to do at the speed I like to move. 

But I will tell you, learning about lipedema and just knowing that I am not a freak of nature from the women’s corner, made a world of difference. The fear spirals in my mind went away, I actually understand what is happening and know what to expect.

So now, like my sister and my mother, I can literally LIVE with lipedema. It doesn’t define me, it doesn’t hold me back, it doesn’t keep me shrouded in mystery, it doesn’t run my life. Just knowing put me back in the driver’s seat for my life and actually empowered me. That’s why I am so excited about this blog and getting the awareness up. 

It has been said that the woman is the neck that turns the head. That behind every successful man is a woman. And Beyonce said “Who runs the world? GIRLS!”. I think I will close with those words because they are all too fitting.

Women, you are beautiful and strong and you are NOT alone. If we are going to run the world, let’s not do it in the dark and make damn sure we are in the driver’s seat of our lives! Only from there can we bring the change to the world that we were born to bring. 🙂

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