From Confusion to Clarity
When I was first diagnosed with lipedema, I had so many emotions. I finally had some answers about my body, which gave me a sense of relief. I also quickly realized that there was so much I needed to learn. Information about lipedema was scattered, and much of it was clinical. I dove into all the places where I saw others with lipedema gathering. There were a few support groups where people shared photos and information about how they were treating or managing their lipedema. I also saw women who were frustrated, angry, and unsure about how to live with lipedema....how to accept that this is not going away....that there is no cure, and it might advance to later stages no matter what they do. Probably because of my background as a social worker, I eventually decided to create my own group. To be honest, once I created it and people started joining I wasn't quite sure what to do with it. I started seeing a theme in the answers to one of the questions I asked as people were joining: What's your biggest struggle? I noticed that a lot of them were saying their biggest struggle was how they felt about their bodies. They felt embarrassed, ashamed, and even disgusted by what they saw in the mirror. Many of them also felt a lot of confusion that they were still being judged by society, even by their doctors, simply based on appearance. They really wanted to know how to make this go away, and knew it wasn't going anywhere. Sure, we need to know the medical side of things, but what about the person living in that body? I realized there was a glaring gap: nobody was talking about how to cope emotionally or how to cultivate self-love through this journey.
The Lipedema Journey
That gap was the birthplace of The Lipedema Journey. I wanted to build a community where the focus wasn't just on medical treatments but on emotional and mental well-being. A place where women could not only find information but also connection, acceptance, and an unapologetic celebration of their unique and amazing qualities as a human. I want to encourage women on the lipedema journey to treat themselves with kindness, not to loathe themselves. I want them to understand that they are not lipedema....the core of who they are is not lipedema. I want to see women with lipedema push back on society and culture that teaches them that they are not worthy of happiness simply because their body is different. It's a culture that somehow taught us that fat is a character flaw.
Don't Forget About the Emotional Impact
Most discussions in the lipedema community focus on treatments and options for managing physical symptoms. And while that's crucial, it often leaves a key component unaddressed: YOU. I'm no expert on lipedema, and I'm always trying to learn more about how to manage my own symptoms and slow progression. I'm taking a different road when it comes to how I want to give back to others on this journey—one paved with compassion, personal growth, and a sense of community. Together, we don't just navigate the challenges; we rise above them.
So, are you in? If you've been searching for a tribe that gets it, look no further. Click here to join us in The Lipedema Journey group on Facebook, as we empower each other to live life with authenticity, confidence, and a generous sprinkle of self-lov
Remember, your journey with lipedema is just one chapter in your incredible life story. It may play a big part in your story, but it's not the only chapter.
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