Connecting the Worldwide Lipedema Community
Lipedema Project co-director Catherine Seo, PhD, is offering a series of live webinars titled Beyond Lipedema: 5 Steps to Living Your BEST Life with the Disease They Call FAT. The first of these on January 14 reached women from Spokane, Washington to the U.K. to Boston, from Georgia to California to Israel; in fact, so many women were interested that the website could not hold them all, so she is offering the MasterClass webinar again on Saturday, February 3 and again on Saturday, February 10. The webinar was aimed at any woman with a confirmed or suspected diagnosis who is looking to take more control of the disease’s effect on her life, and is also Catherine’s introduction to the MasterClass she will be offering from Fall 2022-Spring 2023 with several expert guest speakers.
I was lucky to get a spot in the first webinar group, and spent an intense 45 minutes hearing about strategies for transforming our relationship with our bodies, including the latest thoughts about nutrition; discovering and releasing hidden fears so we can move out into the world with grace and confidence; harnessing the power of our brains; and tapping into the loving community of lipedema ladies everywhere.
Catherine’s moving description of what it feels like to be a woman with lipedema reminded me again that I am not alone, that none of us have to be alone anymore, because there is a whole world of women out there to connect to. We are living with many of the same struggles: We do battle with our weight, but nothing works. We avoid looking at our bodies in the mirror. We live with the knowledge that we are working so very hard, side-by-side with the fear that nothing will help, and the self-loathing of believing that we have somehow failed. It’s an emotional rollercoaster. We feel separated from others and inferior because of our lipedema. We feel powerless to change. For many of us, lipedema is the one really big problem we deal with every day and can’t seem to get a handle on.
5 Key Shifts We Can Make Now
The Overview for Clinicians produced by the Lipedema Project in 2017 has opened up communication with the worldwide medical community in unprecedented ways. This is progress—momentum is building—and yet, one of our greatest challenges is the disbelief and lack of knowledge we lipedema ladies still face from healthcare providers. Seo’s webinar outlined five ways we can reframe our experience to give us a greater sense of agency now, while we wait for the clinical world to catch up.
#1: Find Your Voice
Catherine talked about her own quest to find out about the disease, spurred on by the words of Robert Schuller: “What would you attempt to do if you could not fail?” She interviewed more than 125 experts around the world—and developed a deeper sense of her own voice, which she says is critical to advocating for ourselves.
We are so used to being doubted and dismissed that this will require a deliberate shift in mindset, from “I can’t” to “I can.” We do not have to wait for answers. We can find them for ourselves, use our own voices to fight for what we deserve. I found it very powerful to be reminded of this, because no matter how strong I think I am, I often lose my voice when I am faced with doubters and shamers. We have the right to make ourselves heard.
#2: Let Go of Emotional Baggage
Because we have lived for so long with pain and disfigurement and uncertainty, it is understandable that our psychological well-being is affected. The art of “releasing” is about managing our negative feelings without suppressing them or using destructive means of escape. By addressing what’s at the core of our emotions, we can begin the process of letting go. Catherine acknowledged that this “may sound simple but it’s not always easy.” Still, it seems clear we can find relief and hope by learning to let go and live more in the present.
#3: Retrain Your Brain
Because we are so focused on our bodies, it’s hard to remember that every decision we make comes from our brains. The average person generates 50,000 thoughts a day and makes over one billion synaptic connections. When we starve, our brains are forced to consume themselves, to function under extreme stress and without the nutrients they require. What’s worse, 70% of our daily mental chatter is negative, self-critical, and fearful. What if we could retrain ourselves to honor and support the unique patterns of connectivity in our individual minds? This is one of the ways we can break free of the confines of our disease.
#4: Take Actions Proven to Work
Armed with an understanding of what it means to have lipedema, we can begin to make decisions about what is right for each of us. Catherine reminds us that we can take charge in finding the right combination of actions that works for us as individuals: this is a balance between compression, mindful/healthful eating, surgical approaches, lymphatic massage and physical therapy, emotional support, and safe exercise.
An exciting development is the ever-growing number of positive stories from lipedema ladies who are practicing the Keto way of eating, a low-carb, high-fat, moderate protein regimen that brings about a radical shift in metabolism (from sugar-burning to fat-burning). As hundreds of women are reporting improvements in pain, swelling, size, energy, mobility, and mental clarity, this approach is a very promising action many of us can take. There is a Facebook page on “Lipedema and Keto” for women who are interested in more information.
#5: Seek Abundant Support
For many of us, finding our “tribe” of lipedema sisters has been a revelation. We must hold onto that community and “love it hard,” Catherine said. This connectedness is not just an antidote to isolation, but a way of sharing information and resources that will make it easier for us to live our lives.
This is also where Catherine comes in on an active level: she is offering one-on-one brief coaching sessions to help lipedema ladies formulate their own best plans, one of which might just be to enroll in the “Beyond Lipedema” MasterClass for the spring, a 6-month course covering the latest approaches to managing lipedema across all realms: physical, mental/psychological, emotional, spiritual and social.
I can’t wait to see what unfolds next.