I recently had a conversation with a client that has stayed with me a while. We were talking about her lipedema journey and how, because her condition isn’t as advanced as some of the women she sees online, she sometimes feels like she doesn’t have lipedema “bad enough” to deserve the same level of support or understanding. She worries that other women might look at her and think, “You don’t really understand what this is like.”
That conversation reminded me of something I wish we talked about more often in the lipedema community: lipedema is not a competition.
And yet, sometimes it can feel like we’ve created a hierarchy within our own community. Stage 1 versus Stage 4. Who hurts more? Who has struggled longer? Who has fought harder? Who has had more surgeries? Who deserves more sympathy?
None of those questions serve us.
Lipedema is a chronic condition that can look very different from one woman to another. It progresses differently. Symptoms can vary tremendously. The emotional experience can be completely different from one person to the next. Every stage can bring its own grief, its own challenges, and its own fight for acceptance.
There is no prize for having the most advanced lipedema, and there shouldn’t be a threshold you have to cross before your experience becomes valid.
There Is No “Bad Enough” Stage of Lipedema
One of the hardest things about living with a condition that is often misunderstood is learning to trust your own experience.
Women with earlier-stage lipedema can struggle with this tremendously. When you see photographs or stories from women with more advanced disease, it’s easy to look at your own body and think, Maybe I don’t really have it that bad.
- Maybe your legs don’t look as affected.
- Maybe you’re still relatively mobile.
- Maybe your pain isn’t constant.
- Maybe you haven’t needed surgery.
- Maybe you’re able to wear clothes that another woman with lipedema can’t.
But none of those things mean you don’t deserve support. An earlier stage of lipedema does not mean that your emotional experience isn’t significant. You may still struggle with body image, swelling, tenderness, chronic inflammatory responses, heaviness, clothing, exercise, or the frustration of knowing that your body is responding differently than you expect it to.
You may also be carrying the fear of what could happen in the future. That’s a lot to navigate!
You don’t have to wait until your symptoms become more severe before you allow yourself to take your health seriously. You don’t need to wait until your mobility is significantly affected or until you’ve exhausted every possible treatment option before asking for help.
Your experience matters now.
Advanced Lipedema Deserves Respect, Too
Of course, the other side of this conversation matters just as much. Women with more advanced lipedema deserve respect, compassion, and support. They don’t need our pity, and they certainly don’t need assumptions about how they got there.
We don’t know another woman’s entire story.
We don’t know how long she went without a diagnosis. We don’t know how many doctors dismissed her symptoms or told her that she simply needed to lose weight. We don’t know what treatments she’s tried, what resources she’s had access to, or what was happening in her life while she was trying to navigate her health.
We don’t know what she could afford or whether she had anyone supporting her along the way.
Luckily, we don’t need to know all of those things before we choose compassion.
Advanced lipedema isn’t a failure, just as early-stage lipedema isn’t something a woman should feel guilty about having. Both women deserve to be heard.
We Already Have Enough People Judging Us
Women with lipedema already have enough battles to fight. We’re fighting for healthcare providers who understand the condition and believe us when we describe our symptoms. We’re fighting against the misconception that lipedema is simply a weight problem or the result of not trying hard enough. We’re fighting for appropriate treatment, better education, and insurance coverage.
We’re also fighting for something that can be much harder to put into words. That is the desire to be seen as a whole person instead of being reduced to our legs, our weight, or our diagnosis.
There are already plenty of people outside of the lipedema community who judge us.
We don’t need to do that to each other, too.
When we compare another woman’s experience to our own and decide that hers isn’t “bad enough,” we’re creating another barrier for someone who is already trying to navigate a difficult condition.
When we dismiss a woman with more advanced lipedema because we assume she should have done something differently, we’re making assumptions about a story we don’t know.
I believe we can do better than that.
Your Lipedema Journey Is Yours
One of the most important things I’ve learned through working with women with lipedema is that there isn’t one universal lipedema journey. Your experience may look completely different from the woman next to you, and that’s okay.
Maybe you’re newly diagnosed, and you’re still trying to understand what lipedema means for your future. Maybe you’ve been living with it for decades. Maybe you’re exploring nutrition and lifestyle changes. Maybe you’re considering surgery. Maybe you’ve already had surgery. Maybe you’re focused on conservative therapies. Maybe you’re still trying to find a healthcare provider who understands what you’re experiencing.
At any given time, you could be having a really good month, or a really difficult one. No matter where you find yourself at this moment, all of those experiences belong in this community.
We don’t have to make the same treatment decisions, have the same symptoms, or live in the same stage. We don’t even have to agree about every aspect of managing lipedema.
But we absolutely CAN choose to support one another.
Be the Person Who Shines Light
If you see a woman in an earlier stage struggling, meet her with empathy rather than dismissal. If you see a woman with advanced lipedema, meet her with respect rather than pity.
And when someone makes a different choice than you would make, remember that you don’t know her entire story, nor is her body yours to judge.
Every woman in this community is doing the best she can with the body, information, resources, and support she has available to her.
We don’t need to rank those journeys. We can learn from one another without turning someone’s experience into a measuring stick for our own.
Imagine what could happen if women with lipedema stopped looking sideways at one another and started reaching their hands out instead. Imagine if a newly diagnosed woman could enter this community without worrying that she doesn’t have it “bad enough” to belong. Imagine if a woman with advanced lipedema could share her experience without being reduced to a cautionary tale.
That is the kind of community I want to help create.
We Are Stronger Together
There is so much strength in women supporting other women.
The woman who has been living with lipedema for 20 years has wisdom that a newly diagnosed woman may desperately need. The woman who was just diagnosed may have questions that remind all of us why better education matters. Someone who has had surgery may have an experience that helps another woman make a more informed decision. Someone who has found a nutrition or lifestyle strategy that works well for her may be able to offer an idea that another woman can discuss with her healthcare provider.
We don’t have to compete for space, and in fact, there is room for all of our experiences!
We are stronger together than we are ranked against each other.
I believe mental health and acceptance are an important part of living a long, vital life. Caring for your physical health matters, but so does learning to have compassion for yourself and finding people who allow you to feel understood.
I wish every woman with lipedema peace in her body, support on her journey, and a community where she never feels like she has to prove that her experience is difficult enough to matter.
A Community Where You Don’t Have to Do This Alone
This is one of the reasons I created The Lippy Lady Lounge.
I wanted to create a positive, kind, and understanding space where women with lipedema can come together to learn, ask questions, share their experiences, and find ongoing support.
Whether you’re newly diagnosed, navigating an earlier stage of lipedema, living with more advanced symptoms, or simply looking for people who understand what this journey can feel like, there is a place for you here.
What’s Included in The Lippy Lady Lounge?
Ongoing Education Calls: We host at least two live calls each month covering topics such as lipedema surgery, nutrition, supplementation, integrative testing, conservative therapies, mindset, and more. These calls are designed to give you useful information while also giving you an opportunity to ask questions and learn alongside other women.
Expert Guests: Throughout the year, we welcome professionals in areas such as lymphedema therapy, mental health, holistic wellness, and other areas related to living well with lipedema. You’ll have the opportunity to learn from experts and take away practical ideas you can use in your own journey.
Seasonal Recipes: Each month includes a new recipe pack focused on anti-inflammatory eating that is simple, approachable, and enjoyable. Healthy eating doesn’t have to mean eating the same meals over and over, and I want these recipes to give you ideas you can actually use.
Monthly Coaching Guides: You’ll receive fresh guides each month with nutrition education, reflection prompts, and practical support to help you stay consistent with the habits you’re working on.
Community Support: Perhaps most importantly, you’ll have a place to connect with other women who understand. Share your wins, ask questions, talk through challenges, exchange ideas, and know that you’re not navigating this alone.
Lippy Lady Book Club: We also explore books focused on mindset, health, and nutrition, giving us another opportunity to learn, reflect, and grow together.
Direct Support: Have a question between calls? You can use the private chat to get support and help you move forward with greater clarity and confidence.
And there’s more, including additional resources, bonus calls, and ongoing opportunities to learn and connect.
You Belong Here, Lippy Lady
If you’ve been looking for ongoing support and guidance on your lipedema journey, I’d love to welcome you into The Lippy Lady Lounge.
You don’t need to be at a certain stage. You don’t need to have a certain amount of pain. You don’t need to have tried every treatment. You don’t need to prove anything.
You simply need to be a woman navigating life with lipedema who wants support, education, connection, and a community that understands.
Because lipedema is not a competition. There is no prize for having the hardest journey. There is no ranking system for pain. And there is no “bad enough” threshold you have to cross before you deserve compassion.
Let’s be the people who shine light for one another instead of dimming it.
I hope you’ll come join us inside The Lippy Lady Lounge!
