It’s incredibly difficult to be a woman with lipedema. The only thing harder is being a woman with lipedema who is also a mother with a daughter. Every moment of the hundreds of hours of studying and research I do, every conversation I have with women who are facing this disease, every story I read of a strong woman somewhere in the world who can’t find her way or finally has...it all comes back to her. This little girl who is so confident and full of joy. This little girl who may, someday, be a woman with lipedema.
I have answers for women who are my clients, or at least I can confidently give them information and advice. When I think about my daughter, though, I’m just left with more questions. Is what I’m doing enough? Will the understanding she already has of healthy food choices and the importance of nutrition do anything to keep this disease at bay? Will I be here to help her navigate the complicated path of lipedema if she finds herself in the place I’m in since I had her so late in life? Will what she’s learning about therapies and tools to keep her connective tissue healthy encourage self-care without leading to obsessiveness?
The truth is, I don’t know. I don’t have any answers for her. What I know is that while this disease is difficult, I’ve come to (mostly) accept it for myself. But I can’t bring myself to accept it for her future. My little girl has already learned that Mommy can’t do everything. She watches me tuck myself into the Lympha Press for hours each day and hears me talk about foods I must eat or must avoid. She learns about supplements as we add collagen to our smoothies and she discusses, at a level most adults can’t, the benefits of cupping as she pops the circles of silicon off my arms. Lipedema is as much a part of her daily life as it is mine in a lot of ways.
More than the pain, the lack of mobility, the wish for hips and thighs and arms and abs to be rid of this disease, the missed moments and life-altering effects of lipedema, the questions about my daughter’s future bring tears. At unexpected moments, this disease weaves itself through my relationship with this precious child and the emotion of being a mom of a daughter at risk for lipedema completely overwhelms. At the beach when her first comment is that we need to get in the ocean for the benefits of magnesium. When she asks if she can use the massage gun to help her muscles feel better after a long day of playing. When she forgets my pain and leaps on me for a goodnight hug, and I see a terrified look replace the sweet smile on her face because she’s afraid that she hurt me. Lipedema is always, always present.
I constantly ask myself if I’m doing this the “right” way. I make sure to talk about pounds and inches only in terms of how my lymphatic system is functioning or whether I’m being consistent with this or that thing I need to do to be healthy. We discuss nourishing our bodies and how food is a source of vitamins and minerals to keep our bodies strong and healthy. We talk about self-care as she takes her turn with the Dead Sea mineral foot spa and zooms by me with her thighs on my foam roller yelling out information about the benefits. She asks real questions about lipolymphedema and I try to give her real answers. Answers not just for today, but answers she can carry with her. The truth is, that of all the women I want to help, I want most to help the woman she will become.
There are moments I know I’ve done the hard things well. She talks to me about women we see in public that most likely have lipedema, because at almost seven she can already recognize it in some women. She never says women are overweight. Instead, she wants to know if they are in pain, and if they’re a member of my Facebook group so they can learn how to feel better, and if they are able to do fun things. In those moments, I know I’ve taught her to see women who are struggling with a disease and to have compassion. I only hope that if she grows up to be a woman with lipedema, she can show herself that same compassion instead of the shame and embarrassment so many of us have.
And so for as long as I can, I will talk to her about the ways she can be healthier. I will help her understand nutrition and movement and activity. We will find fun ways to learn about conservative therapies and body care. I will show her how to embrace life and love and laugh. We will talk about God’s blessings and seeing beauty and magic and being wild at heart. All the while, we’ll be creating a life that will help her to thrive, in case one day she does have lipedema. Or even if she doesn’t.