Lipedema for Our Daughters, Revisited

Five years ago I wrote about how the struggle of being the mom of a daughter whose lipedema future is unsure is often harder than the struggles of lipedema itself. To be honest, that struggle is still very real and I expect it will be until I leave this earth.

My daughter is almost 12 now and as she's hitting all of those puberty milestones I'm waiting and watching. Hoping, praying. Since she was a tiny baby breastfeeding and taking probiotics, she's had a better start than I did. I've taught her all I can about nutrition and supplements and the importance of self-care and advocating for yourself and taking ownership of what's going on with your body and researching and finding what works for YOU. She has a healthy, holisitic view of health and has avoided a lot of the trauma and drama I went through as a child. And still, late at night when things are quiet and dark, somewhere in my mom's heart, in that place that will forever worry about your kids, I always wonder if she'll end up with lipedema.

She came home from one of her many dance classes a few weeks ago and said she believes one of her fellow dancers has lipedema. I asked her what made her think that, knowing that she's been able to identify lipedema bodies accurately and very precisely for years. In my mind, I was waiting for a comment about weight because even after all my years of healing my mind and body and helping other women refocus on other aspects of their lives and health, weight is what was drilled into me and weight is what I can't escape as a default "problem" to be dealt with. She didn't say anything about the girl's size at all. She said she worries because it seems like small things cause pain. She said she notices that the texture of her legs looks like mine even through her tights. She said the girl talks about how her legs feel heavy with the kicks they do and how her legs feel achy at the end of class. She said the girl's arms are spongy and she rubs them sometimes and seems cold. I may have cried a little listening to her.

This kid, my kid, knows lipedema and fascia and wellness way beyond her years. She also has a completely different mindset than her mama and I am incredibly thankful that she does. She's getting to that age where bodies are changing, where lipedema can begin to show up, where she will see it in friends around her, not just in adults. It's a shift for her and one she approaches with care and concern for others. And that's why listening to her, I cried and I learned. I learned what this condition can look like to someone who doesn't filter it through the mental storm and emotional baggage surrounding weight.

I looked back at the previous blurb I wrote about daughters and the waiting game we play as moms of these precious girls. Girls we want to save from the endless cycle of pain and crazy symptoms and visits to health care professionals who don't know and don't care. Girls we want to raise to understand more and make earlier, better decisions for themselves than we did. Girls who we hope never have lipedema, but if they do will truly earn the name Lipedema Warrior and avoid those lipedema wimpy years when maybe they accept that there's nothing to be done and they just become more and more disenchanted and disgusted with the bodies they're in. For those of us who have overcome so much, the only acceptable path for our daughters is to march through life as Warriors in a way we're only just now understanding.

How I address lipedema has shifted in the last few years and I'm in a better place where pain and immobility aren't my constant companions. The little girl who watched this journey has learned along with me and it's her goal to become the youngest Block Therapy instructor ever. The little girl who worried about her mama's health is growing into a compassionate, educated young woman who knows not to ignore and push aside symptoms of any kind. She is a student of her own body and is learning to trust what it tells her and be proactive to address her concerns. She doesn't delay self-care. She understands the roles of nutrition and therapies to support health. She knows to rest, to hydrate, to use her voice.

I'm grateful beyond words that my lipedema journey is now on a positive road and that I've gained back so much of my life that I had to give up. I'm thankful that I can help other women whose stories are both similar to and different from my own, each one unique and profound. This new life I have with almost no pain gives me the greatest gift of freedom for my daughter, of moments where she is being prepared for whatever comes, of seeing that my battle with my health impacted her life but didn't ruin her life.

Lipedema Awareness for me is about reaching and helping the masses, but it's also very personal. That's why every single thing I learn, I'm teaching it to her first.