Hey friends,

It's the last week of Lipedema Awareness Month, and summer has officially arrived for most of us. We all know what the heat does to these bodies, so I went looking for a few things to help us stay cool. They're down in Finds and Faves if you need them.

I've also got something on my heart this week about how we treat each other on this road. More on that below.

How do you decide what to try when your feed is full of ads for the latest way to treat your lipedema? Check out my thoughts.

Also, check out what’s been happening this week.

Mostly, I just want to say I'm glad you're here. Let's get into it.

During this special Lipedema Awareness Month webinar, Dr. Wright will discuss the most current scientific literature, including recent systematic reviews, meta-analyses, and findings from the groundbreaking LIPLEG randomized controlled trial. Dr. Wright is also joined by Susan O'Hara, President of the American Lipedema Association, and Bailey Maddox, Lymphedema Therapist, for a discussion on what these findings mean for Lipedema patients, providers, and the future of treatment.

I watched a video this week that has been bothering me. It was a woman saying that lipedema's gotten trendy. She believes some are self-diagnosing when they are just overweight.

She's not entirely wrong. Some people will say they have it and not have it. That's just what happens when people are struggling to figure out their bodies, and they don’t have doctors with the knowledge. One thing that bothered me, though, was this idea that we could sort the real from the fake. The answer to "some people are wrong about their bodies" can't be the rest of us appointing ourselves the judges of who's allowed to be confused. We're all confused. Every one of us spent years not knowing what was happening to our own legs, getting told we ate too much, getting told to try harder, standing in front of the mirror, unable to make sense of what we were looking at.

Honestly, I've been one of the judges. I used to look at a woman at an earlier stage and become bothered. I'd look at her legs and think, I wish mine looked like that, she has no idea how good she has it, she doesn't know what's coming, and she doesn't get to complain. I really thought that. Then one day I realized what I was doing, and I remembered my own journey. Younger, earlier stage, in pain the whole time, and so embarrassed I never showed my legs. Not at the pool, not for anyone, not once. I thought there was something wrong with me that I couldn't even put a name to. I knew exactly how she felt because I had felt every bit of it myself, and somewhere along the way I'd let myself forget.

So when a thinner woman says she has lipedema and someone further along becomes judgmental, I understand where that comes from, but the early stage is still lipedema. Knowing sooner isn't nothing. We should want her to have her answers before she loses ten years to blaming herself the way we did. There’s another aspect to this. Someone earlier on says she's upset about how her legs look, and a woman at stage three reads it and feels the heat rise, because she would give anything to be worried about how her legs look. She just wants to get to the mailbox without it costing her the whole afternoon. She wants to keep her mobility. From where she's standing, somebody crying over a dimple can feel like a slap in the face.

I understand that one, too. When you are fighting to keep your body doing the plain ordinary things, someone else's distress about her thighs can feel almost like an insult. But none of this is a competition. Her fear and your fear are both real. Both of those are grief. We're all on our own path here, and none of us asked to be on it. The woman three stages behind you isn't your enemy, and the woman three stages ahead isn't some future you have to flinch away from. They're just people walking the same strange road you are, doing their best.

And let’s talk about how we’ve all become experts at pointing out lipedema, right? Yes, many of us can spot women with lipedema, but many of us would miss a stage 1 and even many in stage 2. Lipedema can be very subtle in those earlier stages. It shows up differently in different bodies, it hides, it gets missed for years on end. The truth is, we still have so much to learn about this thing, how it starts, who it touches, what it even looks like before it looks like anything at all, and the honest answer to most of our questions is still that we don't fully know yet. And if that's where we actually are, then all that certainty about who belongs here and who is not real.

We're some of the most judged people I know. By doctors, by family, by strangers in a waiting room, and worst of all, by ourselves. Why on earth are we so quick to pick up that judgment and aim it at one another? When you've hurt this long, it's easy to stand guard over the thing you suffered for, easy to feel like they pick up the word too lightly, or cry too loud, or just don't seem to hurt the way you hurt. But nobody's taking anything from you.

It's the last week of Lipedema Awareness Month, and all month we've been asking the world to be aware of us, to quit dismissing us, to take the pain seriously instead of reducing us to a number on a chart or a failure of willpower. I think that awareness has to swing inward too, toward the woman who just got diagnosed and is terrified, toward the woman barely hanging onto her mobility who doesn't have a scrap of energy left to make anyone comfortable about it, and toward the plain fact that whoever you're itching to judge is almost certainly already drowning in judgment, same as you.

I’m encouraging more compassion, less comparing our pain. We don't have to gatekeep our own suffering or line it up worst to least. We can just look at each other and say, I see you're scared, me too, come stand over here with the rest of us.

More people know what lipedema is now. That's a good thing. It's also why your feed is suddenly full of people selling you something. Devices. Diets. Programs. Somebody who found the one thing that fixed everything and would really love for you to buy it, too.

Some of it's real. Some of it isn't. And most of it shows up looking the same, so you can't sort it out just by looking. You have to actually check.

Here are a few questions to ask yourself when deciding if you want to try something new:

1. What kind of proof is this?

Look for evidence or proof. A personal story is the lightest. "It worked for me" might be completely true and still tell you nothing about you, because you have no idea what else that person had going on. A seller or an influencer saying so is lighter still. They win if you believe them.

"Studies show," with no study you can actually find? That's not evidence. A small early study might be nice, but what kind of study? Sometimes studies are funded by the same people selling the thing. Take the time to find out.

2. Where did it come from, and who gains?

Follow the claim back to where it started. Who said it first, who paid for the study, and what that person happens to be selling. Then check the translation. So many claims start as "this might help some people" in a small research paper and show up in the ad as "clinically proven." Again, this isn't about deciding they are lying. It's about knowing who benefits from your yes, so you can make an informed decision.

3. "Promising but unproven" is allowed to be its own answer.

Lipedema research is young and thin. So a lot of what you'll weigh won't be a clean yes or a clean no. It'll be promising but unproven. You don't have to call something a miracle or a scam to take it seriously.

If you want to try something in that in-between zone, treat it like your own little experiment. Decide up front what "it's working" would actually look like for you. Give it a fair shot, not forever. Then watch what your body and your life tell you, instead of what you were told.

And don’t make it mean more than it does. If it helps, good. If it doesn't, that says something about the product or treatment. It says nothing about you.

And a word of caution: supplements are not necessarily safe for you, even when they are available over the counter. It’s always a good idea to talk to your doctor before adding supplements or holistic treatments that could potentially cause harm to organs or interact with your current medications.

It’s officially Summer for many of us, and we all know it can be difficult on a lipedema body. I looked for some fun items to help us beat the heat and have a bit more fun this summer.

There are some pretty fancy neck fans these days, in fun colors like this pink one, to help you stay cool while also looking cute. Or maybe this cooling neck wrap.

We all know how miserable wearing compression can be during hot weather. First, try putting your compression in the freezer before putting them on. Second, get you one of these misting handheld fans. Not only can you use it on your face, but you can spray your legs while wearing your compression to keep them cool.

I’m a huge fan of this tea tree ointment. If you struggle with irritation in your skin folds, you’ll love it. Dry the skin well after your bath or shower and apply in all your folds. You’ll be glad you did.

I’m not an affiliate for any of these products and make no money if you click or purchase. I’ll always let you know if I’m an affiliate for a product.

Thanks for reading.

Hit reply and tell me one thing you'd like to see in future issues. A topic, a question, a resource you wish more women knew about. Anything.

I read every reply.

See you next Friday. 💜

April

P.S.

If you’d like to share some of your lipedema journey in a future Lippy Notes, let me know by clicking reply.