The author Lia Lindmann spent a long time blaming herself for her fat legs. Here she talks about her difficult path to diagnosing lipedema – and how she is doing today.
When I was 14 my legs started to become soft, spongy and fat, the rest of the body was slim. A neighbor said: Your daughter also has very thick legs. Many young women feel the same way. I read a lot of texts in girls' magazines, bought a thigh training machine, had weight cuffs on my legs on my way to school, did gymnastics on my mattress for hours, and passed out nutritional protocols to my classmates to find out how body and food were related. I experimented with whole grain dishes, taught myself how to cook and bake, replaced sugar, and finally slid into a persistent anorexia that was occasionally interrupted by violent bouts of eating.
My soul suffered early
I can no longer say whether I was in pain at the time. I was certainly in pain. Every purchase of pants ended in tears, let out or swallowed as a huge knot in the throat. Every photo that I saw of myself: this is me? My bikini had a skirt that was trying to hide a little leg, I rowed, jumped trampoline, played soccer. And yet I was always the one with the thick thighs. I started to displace and hide my body, wanting to forget that I have it. When I undressed, I cried or scratched my legs hatefully.
I focused on other things in life: studying, singing, friendships, caring for others, achievement and volunteering. And again and again new forms of diet and healthy eating, fitness and advice. My scales became the measure of my self-worth. Pain in the adipose tissue gradually crept in. At night my legs were swollen, itchy and at some point they seemed to want to burst. Walking and standing was uncomfortable. I always just wanted to sit, although that wasn't pleasant either.
I started to work lying down, the pain was the least. It was incomprehensible to me that others said: I also like to stand sometimes. And why did everyone always want to go for a walk? I did that too. Because that's how you do it. But I couldn't enjoy it. I thought this feeling was the “inner bastard” that everyone always talks about and that I think it is particularly big. In general, there had to be a lot wrong with me, I concluded. After all, others seem to do a lot more sport and eat a lot healthier: otherwise they would not be so slim and I would be so "fat" and "lazy" and full of pain.
Doctors put everything on my diet
I visited many doctors during this time. Because of sleep disorders, skin problems, orthopedic problems. Nobody told me: you have lipedema. Or: I refer you to a phlebologist. Little by little I dared to talk about my weight: “Eat less. Cut the bread a few times, then it will look more. Goodbye. ”By now I know that women with weight problems rarely get useful help from doctors. “Lose weight!” Is often the only “advice” and the only “treatment” that they receive. Unwanted overweight is often the result of a metabolic, thyroid, adipose or psyche disorder.
So also with me. My disease is called lipedema. And according to projections, one in ten women is affected. Even if she doesn't know. Fat stem cells increasingly produce enlarged cells. There are inflammations in the cells that cause pain. The blood and lymphatic vessels are fragile. Water is stored. It is easy to get bruises.
Is it my fault?
But in our society, body fat is equated with guilt. That was also the case for me. And with my inner stress, my weight increased steadily. From 65 to 75 kilograms in my late puberty and early twenties despite inline skating and university sports. To 85 kilograms after a lonely stay abroad, to 95 kilograms in an extremely strenuous further training phase in my late 20s. In the swimming pool a friend asked me: "Could it be that you have lipedema?" I? No? It can not be. I'm not sick. I'm just guilt, guilt, guilt, ”I thought. A doctor had never said anything like that.
And: The majority of doctors are still too little familiar with it or "don't believe in the disease" – again a problem of prejudice against fat. Light women with spongy, aching legs often hear: It's not that bad. People with normal weight are advised to exercise more, while those who are overweight should lose weight. Many doctors believe that the issue is now done. Those affected must actually take information or a book about the illness to their doctors so that they can get the necessary help.
When I was diagnosed at 29, a world collapsed for me. I thought it could only go downhill. The "guilt" calls in my head were screaming. Tight compression tights, which initially caused complaints, pictures on Google that showed that my fear of being completely immobile and bedridden one day should now also be my forecast. My thoughts were racing. I wanted to hide and never leave the house again. At the same time, I wanted to fight.
Help through compression
The diagnosis and the compression changed everything for me. Gradually walking became easier. Step by step I lost water from my legs, and finally fat. Doctors could not explain the whole disease to me on short visits. The health insurance company was characterized primarily by rejections. Surgeries are only taken over when the most difficult stage has been reached, but the body weight is still not too high. And that is almost impossible to achieve. Unfortunately, my health insurance company also found that a A pair of compression tights per year should suffice. But: we affected wear them every day. They lose their effect after a few months. This struggle with the health insurance companies is incredibly exhausting for so many patients.
Like many others before me, I started to research what exactly is going on in my body and what we know so far about improvement. What role do cold and heat play? Which diet can help? What should I avoid? Can relaxation help? How could I rebuild my self-confidence? Learn to talk about my illness, to open up to friends, to enjoy partnership and sexuality again? What role do psychotherapy and pain medicine play? And are there any dietary supplements that can compensate for something that is obviously missing in the body?
At the same time, I learned to finally be nice and good to myself and to let go of what pulled me down. I lost half a kilogram every week for about 15 months. From 95 to 56 kilograms. On the legs from dress size 50 (short) to 34/36. I still have lipedema. It is not gone. But I have learned a lot about myself and the disease, I can manage and assess it better.
Get informed!
I now see symptoms of illness as signals. This text is not “Anyone Can Do It” text. The disease is really complex. But: It is a plea for everyone affected to know that they have the disease, that they need adequate care and comprehensive, easily explained information about treatment options and self-help. In digital communities, we fight for needs-based care, against discrimination and for education and cohesion. Some clubs and a large number of self-help groups also work for those affected. If you think you may be affected, please contact us.
The author of this text is Lia Lindmann, author of the guide "Living easier with lipedema", which was published by humboldt in 2020. On the Facebook page "she supports those affected and organizes – together with other activists – digital awareness-raising campaigns. Lia Lindmann also offers individual advice for those affected. More information at:.