Lipedema is not caused by weight. But after fourteen years of living with painful, fibrotic tissue, I have learned that weight control can still be one of the most powerful tools we have.
Once weight has accumulated in lipedema tissue, especially on the legs and arms, it can be incredibly difficult to lose again.. That is exactly why I think this conversation matters. Not because we should blame ourselves, but because prevention and early support can make life with this disease a little less hard in the long run <3
Thank you Carina, It is a daily battle and having the strength to continue with what is helping you. I have learnt this. It is slow so patience is important.
Thank you, Karen. I agree. The slow part is so important to accept. With lipedema, we often do not see quick results, so it really becomes about continuing with the things that help us feel a little better, even when progress feels quiet. Patience is a big part of living with this disease.
Thank you for this!! This has been my intuition—that I need to be very careful to nourish my body well and not accumulate weight that will then be very hard to impossible to lose. And this is where I see my lipedema diagnosis as a gift, in a way. I now have the motivation to treat my body with the care it deserves, which will hopefully help me maintain health and mobility perhaps even longer than I would have otherwise!
I feel the same. The lipedema diagnosis itself is not a gift, but the understanding it gives us can be. For me, it has helped separate blame from responsibility. We did not cause lipedema, and we cannot diet it away. But we can still make choices that give the tissue a better environment to live in. That feels empowering to me, because even when we cannot control the disease completely, we can still support our bodies in ways that may matter for pain, mobility and long-term health.
Very true. The lipedema itself is not a gift, but I sure am glad I know what it is and that conservative treatment and weight management is all generally good for me—not some medication with terrible side effects or something like that. Now that I've hit 40 and see that everyone seems to be sick with something or other (thyroid issues, fertility problems, cancer, etc.), I feel like it could be a lot worse.
I just had AI tell me I have EDS due to carrying a Collagen variant. All the doctors missed it. I was diagnosed ten years ago with Lipedema and now I found this out. Explains so much.
Weight does matter and it becomes almost impossible to lose what has accumulated on those legs and arms.
Once weight has accumulated in lipedema tissue, especially on the legs and arms, it can be incredibly difficult to lose again.. That is exactly why I think this conversation matters. Not because we should blame ourselves, but because prevention and early support can make life with this disease a little less hard in the long run <3
Thank you Carina, It is a daily battle and having the strength to continue with what is helping you. I have learnt this. It is slow so patience is important.
Thank you, Karen. I agree. The slow part is so important to accept. With lipedema, we often do not see quick results, so it really becomes about continuing with the things that help us feel a little better, even when progress feels quiet. Patience is a big part of living with this disease.
Thank you for this!! This has been my intuition—that I need to be very careful to nourish my body well and not accumulate weight that will then be very hard to impossible to lose. And this is where I see my lipedema diagnosis as a gift, in a way. I now have the motivation to treat my body with the care it deserves, which will hopefully help me maintain health and mobility perhaps even longer than I would have otherwise!
I feel the same. The lipedema diagnosis itself is not a gift, but the understanding it gives us can be. For me, it has helped separate blame from responsibility. We did not cause lipedema, and we cannot diet it away. But we can still make choices that give the tissue a better environment to live in. That feels empowering to me, because even when we cannot control the disease completely, we can still support our bodies in ways that may matter for pain, mobility and long-term health.
Very true. The lipedema itself is not a gift, but I sure am glad I know what it is and that conservative treatment and weight management is all generally good for me—not some medication with terrible side effects or something like that. Now that I've hit 40 and see that everyone seems to be sick with something or other (thyroid issues, fertility problems, cancer, etc.), I feel like it could be a lot worse.
I just had AI tell me I have EDS due to carrying a Collagen variant. All the doctors missed it. I was diagnosed ten years ago with Lipedema and now I found this out. Explains so much.