Lipedema,  Siouxie's Journey,  Style and Fashion

A Reason to Stop Hiding Those Legs

I will never forget the day I was diagnosed with Lipedema. I’d never heard of it before, and though I was relieved to have answers, it didn’t really mean that much to me. Yet… 

This was in 2013 and there were no brochures or handouts given to me explaining the nuances of lipedema. It was just me, a highly knowledgeable doctor, and a diagnosis. 

It was only afterwards, when I was alone in front of my computer and hungry to learn more about this condition that I googled “lipedema”. After a bit of clicking on this link and that (there weren’t a lot of search results back then), I came across a page with pictures. I sat there eyes wide, transfixed by the images of women’s legs with lipedema–a mirror image of MY legs!

Tears rolled down my cheeks and for the first time–maybe ever in my life–I felt a measure of peace and reassurance that I was not alone, and that perhaps I was even “normal”. 

I’d spent my entire life hiding my thighs behind longer shirts, long skirts, flowy cardigans, and baggy trousers. In all my years, I’d never seen legs that looked quite like mine. Never. 

I was so eager to meet these other women like me, that I anxiously awaited my approval for the Lipedema Sisters Facebook group. Once accepted, I immediately scrolled through the posts digesting comments, posts about symptoms, and pictures

I’d never seen so many legs that looked so much like mine. Some were bigger. Some were smaller. Some had bigger calves. But so many mirrored my own thick thighs with that shelf that extends off the hips.

I remember distinctly a feeling of finally belonging. And I remember that I felt a body-security I’d never felt before. I was not alone.

But WHY had it taken over four decades for me to find others who looked like me? 

I mean, here was a place where there were hundreds of women. But where had they been all my life? 

I have to admit that a part of me felt a little betrayed…and if I’m being honest, a little resentful. There were so many. 

Of course the answer is so obvious now…

“They” are me. 

A lifetime of hiding our legs from the world meant that our legs were hidden from the world. 

Cloaked in cleverly fitted blazers, coats, and billowy tops. Hidden within the folds of wraps and sarongs and the oversized towel. When you do something most of your life, you tend to get very clever at doing it, and it seems that I was not alone in this bit of mastery. 

But this was before Facebook and Instagram and the endless opportunity provided by social media to melt away boundaries and open new vistas.

This was before there was an entire movement with the guts to stand up and say: “We have curves and lumps and bumps and we don’t care if you like them or not. This is us, and we are glorious!” 

There has never been a better time till now to shed our wraps and cloaks. And it is time. There are still hundreds of thousands of US out there hiding our legs and wondering why we are different. 

When I was creating this blog, I used a photo of myself in a swimsuit for the header image of the blog post on my lipedema diagnosis. I sat there for ages agonizing over the photo and whether I should use another one instead. 

I mentioned my anxiety about using this picture to my husband as he was checking in on my progress over my shoulder.

That’s when he said the most remarkable thing: “Babe, you have to use that photo. Remember how you felt when you found legs that look like yours? Somewhere out there is a woman with legs like yours that doesn’t know she’s not alone. You are beautiful and it’s okay. You have to use that picture.” 

Photo by: Savannah Frost

I should mention that I had these photos taken by a friend a month after I was diagnosed with lipedema. I’d wanted to document my body and celebrate it at least once before I had my surgeries and changed my body forever.

I remember thinking that I’d wasted so many moments in my life trying to hide my legs from the world. Still, I’ve never shared them anywhere publicly until now. In all this time, I was still afraid to just be me.

But all of that changed in the past couple months because of social media. 

I was scrolling through Instagram and stumbled across a woman named Ioana Chira. I’m familiar enough with lipedema now that I can spot it pretty quickly, and I was sure she had lipedema before I even looked at her profile. I was absolutely riveted by her shameless confidence in tight clothes, sassy outfits, swimwear, whatever. Just stunning!

This is a girl who owns her curves and as it turns out, she does have lipedema. The thing that amazed and excited me is that she has over a million followers!

She talks about Internet bullies and body shamers and how she is the light who gets to decide how she lives. She is a body positivity influencer if I’ve ever seen one. I scrolled through so many comments of women saying that they think they might have lipedema too thanks to her raising awareness through her account. She’s done a TedTalk on body positivity and been featured in news media sites. She’s a certified personal trainer and she doesn’t let the haters shame her, and she’s fantastic. 

I was so inspired by her courage that I realized that we need MORE women like her.

Strong, courageous, resilient. That’s when I decided to create this blog for real. I realized that the best way for us to raise awareness and make it okay to shed those wraps and layers is by doing it ourselves.

It’s okay if the idea of that makes you nervous. It makes me nervous too. But that will fade in time and as we take action ourselves. And we will become part of the new normal (because we already are even if we think we aren’t). 

What do you say? Won’t you join in the movement too?

Tag me with your photos so I can reshare and post them @lipedema.living and #lipedemaliving and if you’re willing, on the blog as well. Just contact us here. I will create a follow-up post to this.

6 Comments

  • Kelly Maynard

    You are BRAVE! Thank you (and your daughters) for doing this blog! It is just so inspiring and will help ladies in ways you cannot even imagine! Hugs!

  • Debbie

    I am not alone.! WOW! What a wonderful feeling.
    I am still not ready at almost 65 to let it all hang out But, perhaps sharing with others who have what I now know 100% I have will help.
    Thank you for sharing your story

    • Siouxie

      Hi Debbie! You are not alone. 🙂 Thank you for taking the time to comment and share a bit about yourself. And yes, the more who know, the better! If you haven’t subscribed to get updates on future blog posts, I’d love for you to do that so we can stay in touch. I have some exciting posts coming up!

  • Shelley J.

    Wow Siouxie!!! This blog and the entire site are amazing. This is really an eye-opener for me. My sister and my younger daughter have had this practically their entire lives I have watched my daughter struggle with it as young men have rejected her, all while putting on a brave face. And seeing the pictures, I can see that my pre-menopause has brought me in as a late-comer to this game. Now I know why I have formed my “shelf” and my puckers of fat from my buttocks down to my knees that won’t go away, so I have skillfully covered them. I can only imagine what it has been like living with this your whole life. I am happy to help in any way to educate on this as no woman should ever feel ashamed of her body. Thank you for your bravery in confronting all of this and creating this site!

    • Siouxie

      Thank you so much Shelley! It’s amazing how these hormonal triggers occur differently for so many of us. I was doing well for some time until this perimenopausal nonsense triggered it newly. Luckily, there are so many things we can naturally to help minimize the impact. I think as we keep raising awareness, we can help so many others too.

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