I am so grateful to have found this Substack after being diagnosed with lipedema in April 2025 but having dealt with this disease for at least 23 years. (Thank you to those who share on social media since they unlocked the answers I so desperately needed after two decades!)
Something I’ve been doing that feels a bit controversial in the lippy world is heavy lifting. I can bench press my weight, leg press 500 lbs, and do 12 wide grip pull-ups. You’d never know how much muscle is in my legs since it is coated in fibrous lippy tissue. 😞
I completely agree, and I have enormous appreciation for lipedema influencers who share their knowledge and lived experience so openly. I personally lived with a lipedema diagnosis for almost ten years without a community, without anyone to exchange experiences with, and without role models to look up to.
Thank you so much for commenting and for contributing to this community. It truly means a lot 💛
I’m so sorry you also had to face this disease alone. It’s so isolating at times, isn’t it? Now that I’m diagnosed I find that it’s hard for folks who I interact with in person to understand my diagnosis because I “look so healthy.” I remind them that people silently carry battles no one knows about. I don’t share how my legs feel like concrete or how I suddenly have 5 painful bruises that came out of nowhere. And I certainly don’t show my legs. No one would know…but now I feel it’s important to talk about it and raise awareness.
Yes, it is. I don't know anyone else with lipedema except for those I've met online or through other lipedema communities. I definitely missed that when I was younger. And I feel that too, especially after lipedema reduction surgery. Some thought it was just cosmetic, and some thought I was cured of the disease. So glad to have you here, Andrea. Thanks for commenting and sharing your thoughts.
I am so grateful to have found this Substack after being diagnosed with lipedema in April 2025 but having dealt with this disease for at least 23 years. (Thank you to those who share on social media since they unlocked the answers I so desperately needed after two decades!)
Something I’ve been doing that feels a bit controversial in the lippy world is heavy lifting. I can bench press my weight, leg press 500 lbs, and do 12 wide grip pull-ups. You’d never know how much muscle is in my legs since it is coated in fibrous lippy tissue. 😞
I completely agree, and I have enormous appreciation for lipedema influencers who share their knowledge and lived experience so openly. I personally lived with a lipedema diagnosis for almost ten years without a community, without anyone to exchange experiences with, and without role models to look up to.
Thank you so much for commenting and for contributing to this community. It truly means a lot 💛
I’m so sorry you also had to face this disease alone. It’s so isolating at times, isn’t it? Now that I’m diagnosed I find that it’s hard for folks who I interact with in person to understand my diagnosis because I “look so healthy.” I remind them that people silently carry battles no one knows about. I don’t share how my legs feel like concrete or how I suddenly have 5 painful bruises that came out of nowhere. And I certainly don’t show my legs. No one would know…but now I feel it’s important to talk about it and raise awareness.
Yes, it is. I don't know anyone else with lipedema except for those I've met online or through other lipedema communities. I definitely missed that when I was younger. And I feel that too, especially after lipedema reduction surgery. Some thought it was just cosmetic, and some thought I was cured of the disease. So glad to have you here, Andrea. Thanks for commenting and sharing your thoughts.