Lipedema Stories

Emma Chasteen

[Image Above]

I was starting to get lipedema and had no idea.

In the next grade, kids would tease me for wearing skirts telling me that skirts aren't meant for my body.

It would get worse, and i would try diets, starvation, and overcompensation.

I would hide my legs all summer and wear my clothes right up until getting in the lake. It got even worse when my family started to make negative comments or even just neutral ones that drew attention to my insecurities

My mom would often tell me to change and tell me I needed to dress "size appropriate" and believed that women with bodies like mine shouldn't show it off.

Kids were mean so i quit showing my legs at all. family joked about my cankles and how I got it from my grandpa's side. They would point out my lack of ankle and ask me if I was pregnant.

I couldn't afford prom stuff. I was gifted a short black dress but i lost more Weight so it was baggy. I decided not to even go because i didn't want my legs to show. I really wish I would have had the thick skin I do now. I missed moments and memories all because I was afraid of what people would think or say. I didn't feel like I could even look pretty so I just didn't buy my ticket and backed out on my date

Before prom, my friends wanted to go get pizza at a local bar and grill and we were waiting in line when I passed out.

I was down in front of the door. My friend said my eyes rolled in the back of my head. When I woke up the door was pushing on me, because I went down right by the door...and I heard people talking about if I was on something or drunk or something. I didn't even have the food with them, I asked one of them to give me a ride home because even though it was just a few blocks I still felt weak.

People say I'm brave now because I dress however I want, show my big body. I do it for the girl that missed her prom and good times. I do it so I can feel comfortable in the heat or feel sexy when I want. I do it because there are girls like me who need to see their bodies represented.

And I remember being concerned about how my body looked when this picture was taken. Kids gave me comments like that at school. Or at the beach, they would yell that a whale was coming and watch out.

I got my first period at my uncles house and he fed me a TV dinner. The Salisbury steak. And I was craving something else. I was still hungry. I asked if I could eat something else and he told me that if I'm not careful I'm gonna end up like my mother.😳

My mom told me often to change my outfits because they weren't "size appropriate" and she forbid me to wear a bikini or else she wouldn't take me to the beach. Just so cruel.

Fat phobia needs to go!

Amanda

You’re telling the story so many of us had. Thank you. Mine is similar.

My dad used to make me skip meals, weigh me while commenting on my body, tell me I was “disgusting.” Kids were often kinder than adults. My pediatrician was the worst, in fact, humiliating me at each visit.

It wouldn’t have been okay for trusted adults to treat a child like that no matter what my size, but in fact I was very thin, just with big legs. I, too, fell into habits of food restriction and excess exercise to try to discipline my “disgusting” legs.

Now, decades on, I’m still working to love and appreciate all my capable body CAN do for me and all the real beauty it DOES or I do have.

In fact, though unlucky in some important ways, we’re all also so lucky: We’re HERE, and we’re teaching ourselves and others how to take care of us the right ways.

Mary J. Kay

I have struggled with weight my entire life. I am 70 years old. I gained substantial weight with both of my pregnancies that I was never able to lose. I have also been food addicted the majority of my life. I think my Lipedema came alive with hormonal change during pregnancy. I gained a large amount of weight with each of my two pregnancies and never really lost it.

At 43, after significant weight loss, I underwent a hysterectomy and rapidly gained the weight back with most of it landing below my waist as saddlebags, fat pockets on my ankles, and generally larger leg circumference.

One day, when in a really low place with my lumpy lower body, I googled “why am I so heavy below the waist and so normal sized above my waist? A picture of lipedema models popped up on the screen and I thought to myself “that’s my body”.

I am a voracious researcher and started researching Lipedema. I was terrified and spiraled into depression and hopelessness as I learned that the medical community has little knowledge of this disorder and there are very few physicians in the U.S. who are specialized, are educated, or are even remotely interested in learning anything about it.

During my research I came across Lipedema-Simplified and it changed everything for me. I could actually learn and talk to other women who were experiencing the same thing. My first move was to make an appointment with my internal med physician to get a diagnosis. When I shared my thoughts that I had Lipedema she didn’t examine me. She poked my leg and said “I’ll refer you to a physical therapist who specializes in Lymphedema.” She would have no further discussion with me. I felt hopeless and dismissed when I left the office.

I made an appointment with the physical therapist. She was instrumental is helping me acquire a Lympha Press which to this day I am very grateful for. Another frustration with insurance is that I’m unable to see my physical therapist more than every couple months. They will only cover visits if my condition is worsening. They don’t cover visits to maintain or improve the disorder symptoms. This all adds to the frustration.

The physical therapist told me after my first appointment, “Good for you for taking your health into your own hands”. She understands there is little help from the medical community for those with Lipedema. Unfortunately, we with Lipedema need to be our own advocate, do our own research and inform our medical team. Even though my physical therapist’s expertise is with Lymphedema, she had very little knowledge of all of the self-care that is available to improve or maintain this disorder like change of diet, regular manual lymphatic drainage, dry brushing, swimming, movement of all kind, skin care, meditation, etc. This, I learned from Lipedema Simplified.

I owe so much to the Lipedema TRIBE that I joined in November of 2020. I shudder to think where I would be today if I had not stumbled upon them on google. I can honestly say everything I have learned about this disorder I have learned from that community.

I owe a great deal of thanks, respect, and gratitude to Catherine Seo who started it all along with everyone involved (too numerous to name). They are invaluable!!!

Today the self-care I use includes swimming each morning, a minimum of a 3-mile walk each day, dry brushing, use of my Lympha Press, wearing full compression tights and continuing to stay in touch with Lipedema Simplified research, CSIG’s, webinars, etc. as self-care and science continue to evolve.