Yes, I’m so weary of wellness culture speaking into it as well with “if you just..” or “have you tried..”. I think highlighting the chronic progressiveness of it would also be helpful!!!
Wellness culture can definitely be a detriment to us because it doesn't acknowledge that we have a progressive disease that needs actual medical treatment. I dare say that body positivity has a similar issue, because although it embraces the "I accept my body for what it is" it also tends to ignore that we can do things to improve our body, thus improve our disease progression. I prefer body neutrality. :)
Absolutely! People don’t realize how much lipedema is always in the back of our minds. The mental load of keeping everything balanced so we can feel good and live our best lives is so real.
I have separate diagnoses of lymphedema and lipedema and and a lympholipedema diagnosis too. I’m an NP and spent years trying to convince my providers that I have these conditions. When I finally was seen in that specialty clinic the provider assured me that I was correct, but to this day other providers doubt my diagnoses. It’s truly frustrating.
Yes, I hear you! I believe if lipedema were classified differently, to move away from a "fat disorder," which can be construed as obesity, because fat is so stigmatized in our society, especially since this relates to women.
I so appreciate your Substack. Really love your voice for and with us Lipedema folks. Thank you.
thank you so much, Elizabeth!
Yes, I’m so weary of wellness culture speaking into it as well with “if you just..” or “have you tried..”. I think highlighting the chronic progressiveness of it would also be helpful!!!
Wellness culture can definitely be a detriment to us because it doesn't acknowledge that we have a progressive disease that needs actual medical treatment. I dare say that body positivity has a similar issue, because although it embraces the "I accept my body for what it is" it also tends to ignore that we can do things to improve our body, thus improve our disease progression. I prefer body neutrality. :)
And … if people only knew what I did in a day, a week, a year to fight this disease!!!
Absolutely! People don’t realize how much lipedema is always in the back of our minds. The mental load of keeping everything balanced so we can feel good and live our best lives is so real.
I have separate diagnoses of lymphedema and lipedema and and a lympholipedema diagnosis too. I’m an NP and spent years trying to convince my providers that I have these conditions. When I finally was seen in that specialty clinic the provider assured me that I was correct, but to this day other providers doubt my diagnoses. It’s truly frustrating.
Yes, I hear you! I believe if lipedema were classified differently, to move away from a "fat disorder," which can be construed as obesity, because fat is so stigmatized in our society, especially since this relates to women.