APRIL’S NOTE
Hey friends,
This week I'm sharing an update from the lipedema research world (a new standardized tool that could help studies finally speak the same language), plus an interview with Dr. Aisha Durham on living with a lipedema diagnosis. Then I get personal about something I think a lot of us do without realizing it: waiting to be seen until our bodies feel "ready." I don't want you to wait the way I did. Finally, since it's hot everywhere, I rounded up some fun summer outfit videos in Finds and Faves to inspire you.
THIS WEEK IN LIPEDEMA
A group of some of the biggest names in lipedema research (Karen Herbst, Thomas Wright, Steven Dean, and a long list of others) published a standardized data collection tool, meant to get every lipedema study asking the same questions in the same way. According to the article, “The Lipedema Foundation (LF) partnered with clinicians, researchers, and biostatisticians to develop a Lipedema Common Case Report Form (CCRF).” Right now, if you compare ten lipedema studies, you'll often find ten different definitions of stage, ten different ways of measuring pain, and ten different intake forms. That makes it nearly impossible to combine data across studies or build the kind of large-scale evidence base that gets the attention of insurance-industry decision-makers and shapes medical school curricula. This won't change anything for you tomorrow. But it's important work that leads to big progress in care and coverage in the future. You can find the article published in Frontiers in Global Women’s Health.
University of South Florida Professor of Communication, Dr. Aisha Durham, discusses how her life has been impacted by her lipedema diagnosis in this interview.
Did you catch The Role of Therapy in Managing Lipedema Webinar “Physical Activity in Lipedema” presented by The Lipedema Foundation back in June? I really enjoyed it and thought you would as well.
I spent years waiting. You don’t have to.
Have you ever noticed that having lipedema has led you to do a lot of “waiting” in your life? I certainly have.
You tell yourself you'll do the thing once you're feeling better about your body; once the swelling is down, or you've lost some weight, or you find a doctor who gives you the right plan. It sounds reasonable when you say it to yourself, right? You know you'll feel more comfortable after those things have happened.
But the better time keeps moving.
It took me many years to go to a public swimming pool with my children. I kept telling myself that I would go when I lost weight and felt more comfortable in a bathing suit. When I finally stopped waiting, I realized I had lost out on years of memories.
I want to say something to you that I wish someone had said to me all those years ago: You do not have to earn the right to be seen. There is no amount of progress or change that finally unlocks that door, because it was never locked.
You always had the right to be seen. You've had it the entire time you've been waiting.
I know how strange that can feel to read when being seen is one of your biggest fears. When a photo gets taken, your first instinct is to stand behind others or ask that it not be posted on social media. I understand that desire to hide, and I'm not going to talk you out of it in one email. Honestly, I still fight that feeling all the time. But I do want to separate two things.
One is your body, and how it feels, and what it needs. It deserves care. The other is your worth. You're allowed to take up space, be in the picture, wear the thing, or want to be looked at with kindness. You were always deserving of that. It doesn't change whether you've lost weight, worn compression, exercised, followed the perfect diet, or done absolutely nothing.
I spent many years waiting. I didn't buy nice clothes because I was waiting. I didn't go on vacation because I was waiting. I didn't go to family events because I was waiting...and on and on and on.
Much of what we read about managing our lipedema skips this idea. It goes straight to the fixing…the next protocol, the next tool or exercise, the latest supplement, etc. There's a place for information about treatment, and I'm not against any of it. But when the entire conversation is about intervention, there's an underlying, silent message that can teach you that you're a problem waiting to be solved; that you'll be worth seeing once the solving is done.
You won't be more worthy than you are right now. You'll hopefully feel better, be more comfortable, and have less pain.
And when those things happen, and you still haven't addressed your feelings of self-worth, you'll still feel bad about your body. Ask some lipedema patients who have had surgery or have lost a lot of weight. You might be surprised.
Being seen is allowed today, in the body you're in while you read this.
I'd like to gently encourage you to take one step toward allowing yourself to be seen in a way that you've been avoiding. Hit reply and tell me what you'd like to do. I can help you come up with some ideas if you're unsure.
FINDS AND FAVES
Most of us are dealing with unbearable heat these days. I found some videos to give us ideas for comfortable summer outfits.
Summer Plus Size Wardrobe Essentials For Women Over 40 | Quince Haul
That’s it for this week.
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.