Hey friends,

Good news to open with this week, and it's been a long time coming. We finally have lipedema-specific ICD-10 codes on the way. I'll walk you through what that means and why it's worth celebrating.

There's also a piece in here about self-care and the idea that we have to earn it. I’d love to know your thoughts.

Glad you're here,
April

ICD-10 codes for lipedema are coming. After years of lipedema getting filed under "edema, unspecified" or whatever code a billing office could make stick, the United States finally has lipedema-specific ICD-10 codes. Approved, effective October 1, 2027.

Why is this such a big deal? A condition the system can't code is a condition it can't count, and a condition it can't count is easy to wave off as too rare or too vague to fund or study. A specific code makes lipedema legible to the people who decide what gets researched and what gets covered. It also makes a claim easier to fight when the code on it finally says the name of your disease.

For women who've heard for years that it's just fat, just you, just try harder, the name is going on the record now. It will be in black and white. They can’t tell you it’s not real or it doesn’t exist or you made it up. It validates you.

Codes can depend on whether you have lipedema or lipedema and lymphedema, as well as codes for different stages. If you’re like me and you love to research, you can read more about the code suggestions by visiting the link to the most recent CDC meeting where these suggestions were made, on March 17-18 of 2026. You can click on the Topic Packet link and go to page 63.

To all the medical professionals who have worked tirelessly for several years to make this happen, Thank You! Thank you! Thank you!

There's a new study out of Istanbul looking at pain and lipedema. It’s a small one. 30 women with lipedema, 30 without, but the findings are interesting. You can read the abstract HERE.

They found that the women with lipedema had more pain, lower pain thresholds, and something called central sensitization, which is basically the nervous system turning the volume up on pain over time. They also scored higher on depression and anxiety.

Now, the study didn't prove why. But I've been saying for a long time that our emotional health should not be an afterthought when it comes to managing lipedema. When we are dealing with chronic stress, anxiety, and depression, our bodies feel it.

I want to be careful with one term the researchers used, because it stings. Pain catastrophizing. It sounds like they're saying the pain is in our heads. They're not. The nervous system changes they're measuring are real and physical. The pain is real. What the study is pointing at is that the mind and the body aren't separate, and taking care of one helps the other.

So I'll say what I always say. Only good things come from taking care of ourselves emotionally. Not because it'll shrink anything or fix anything on a timeline. Because you're a whole person living a whole life right now, and you deserve care for all of it.

Last week, we mentioned this PubMed article on the impact of lipedema on sexual function. It was pointed out by our friend, Kasi Grosvenor, a lipedema patient and project manager at The Lipedema Foundation, that the Lipedema Foundation has a blog post on this topic that includes a downloadable printout to help guide conversations about this with your healthcare providers and partners. You can find that blog post HERE.

FYI: Kasi also has a blog about her own journey with lipedema at Thriving With Lipedema.

For a long time, I didn't understand the point of self-care.
I mean that honestly. If there wasn't a specific outcome attached to it, doing it felt selfish. I always had so many other things to do. Sitting down to do something just for me, with nothing to show for it afterward, felt like time I hadn't earned. So I mostly didn't. And when I did, I felt a little guilty the whole way through.

Then lipedema entered the picture, and self-care got even narrower. Once you have a diagnosis, "taking care of yourself" quietly turns into taking care of your lipedema. The compression. The appointments. The movement you're supposed to do, the foods you're supposed to watch, the routines built around managing a condition that doesn't go away. All of it is care, technically. But all of it is also pointed at the lipedema, not at you. Your body becomes a project. And every kind thing you do for it is really just maintenance on the project.

I can't tell you what the moment was, but eventually I started to understand what was happening. There wasn't a single morning when it all clicked. I started realizing that my mindset was all wrong, and I didn't have to earn self-care. That it didn't have to come with a result. That I could do something simply because of how it made me feel, and that was reason enough.

That sounds like it’s not a big deal, but it is. Because if you've spent years treating your own care as something that has to justify itself, letting go of the justification changes everything. The bath doesn't have to help anything. The walk doesn't have to count toward something. The thing you do that has no measurable purpose, the one that just feels good, that one is allowed too. Maybe especially that one.

Self-care is a form of self-love. I don't think I really understood that before. But if self-care is a way of showing yourself love, then what happens when you don't actually feel much love for yourself yet? What about when you look at your body and what you mostly feel is frustration?

I think you do it anyway. You care for yourself before you believe you deserve it. You do the small kind thing, not because you've finally arrived at loving yourself, but as a way of getting there. You show yourself care first. Doing it starts to make it true. The care comes before the belief, and then slowly the belief catches up.

I've come to think self-acceptance can work backwards from how I always assumed. I used to think you had to feel good about yourself to treat yourself well. Now I think it can go the other way. You treat yourself well, again and again, even when it feels unearned, and eventually some part of you starts to believe the message.

Where so much of the talk is about what to fix and what to try and what might still be possible, I want to say something different. You don't have to wait. You don't have to get your body to a certain place before you're allowed to be good to it. Self-care isn't a reward for progress or proof you're managing well. It can just be love, given to yourself, for no reason other than that you're here.

So this week, I'd offer you this. Do one thing for yourself that has no outcome attached. Nothing that helps the lipedema. Nothing you can measure. Just one small act of self-care that exists only because it feels good. Just because you're you.

Hit reply and tell me what you plan to do. I’d love to hear from you.

Have you ever heard of Kibbe Body Typing? I recently stumbled upon it, and I’m intrigued. Most of what I see about it doesn’t really talk about larger bodies, but I did find this blog post that discusses how to find your type at any size. Have you ever heard of this or figured out your type? What do you think about it?

Summer can be difficult when you have mobility limitations or need to use a scooter or wheelchair. I found a great article with tips on things that you can do during the summer, even when faced with these challenges.

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.