As a woman living with lipedema (not lymphedema) I really appreciate this article. I go to great lengths to slow the progression of my disease. I live low carb and exercise an average of 8 hours a week, but I have a very high BMI and a lot of fat in my upper arms, thighs, calves, but and hips. It will not go away no matter how hard I work. When I become so big that I lose the ability to walk, the only real treatment left is surgery, which my insurance will not cover because they consider it cosmetic. It’s hard because when I detail my lifestyle to a doctor, they seem to feel I’m not at risk to lose my mobility. Certain parts of me, my face, my upper waist, my back and lower arms remain very slim after all. They seem to think I’ll only get bigger if I let go of my intense diet. But already I know the lipedema effects how I walk because my legs are so big. Getting off my diet and exercise regiment due to Covid was enough to gain 25 lbs, and it won’t all come off. Menopause and hopefully pregnancy are both ahead of me and both of those conditions dramatically worsen lipedema. Yet it’s assumed I’ll only get big if somehow I mess up, and if I just always diet and exercise perfectly everyday for the rest of my life and never experience pregnancy or menopause, I should be just fine. I wish there were more treatments available for lipedema and they were covered by insurance instead of expecting me to never gain weight every for the rest of my life. I also hate it when doctors assume I’m heavy due to a lack of discipline, when I’m the strictest diet of anyone I know. I’ve had doctors recommend I “consider adding moderate exercise such as walking” while I’m already running, doing martial arts, bikram yoga, and roller skating.

Since puberty I’ve known my body reacts to diet and exercise differently than others and I’ve had to work harder. It’s annoying seeing others eat ice cream, bread, and pastries but be 60 lbs lighter than me and get praise for being healthier than I. I wish people didn’t assume what they do about me because I’m fat with lipedema.
Thanks for writing this article, it helps a lot.