Heavy, aching limbs, hatred of one’s own body and years of self-doubt: Our author tells her story of suffering with an illness that, although painful, hardly gets any attention: lipedema.
“You’re very feminine” – that’s a sentence I never want to hear again in my life. I know friends and family have always tried to reassure me with these words when I was desperate about my own body and couldn’t show satisfactory results despite exercise and a healthy diet. After all, not every body looks the same. That’s true, but unfortunately I don’t have the (supposedly) desirable Kardashian curves; instead, my curves come from a disease called lipedema.
Lipedema is a chronic fat distribution disorder and occurs almost exclusively in women. Often after hormonal changes such as puberty or pregnancy. In addition to the visible increases in fat on the arms and legs, there are regularly noticeable symptoms such as pain and increased sensitivity to pressure in the skin. The causes of the disease are unclear and there are two treatment options: conservative therapy, with compression garments and manual lymphatic drainage, or surgical therapy using liposuction. Both mean a fight with the health insurance companies. But first from the beginning.
From slim child to pug-like Eleve
I was a very slim, even thin child. I remember scenes where my parents chased after me with a spoon so that I just eat. My grandparents were always worried that something was missing from me – until puberty came. I started dancing ballet at the age of four, was actually quite talented and was placed in an advanced class and there was talk of a sports and ballet boarding school. But I suddenly stood out among all the other girls: I had noticeably thicker thighs than the rest of my ballet class and I also stood out among my classmates. Suddenly everyone was teasing me that I was too fat and the main roles in the ballet had long since been given to other, thinner girls. I was desperate. I went on my first diet when I was 12 years old.
A teenage dieting career
It has long been scientifically proven that diets are of no use. And so I starved myself when I was a teenager, only to gain weight again afterwards. When I was 14, I took pills that swell in my stomach to curb my appetite. Low carb, no carb, Weight Watchers, Montignac, Glyx, Atkins, food combining – I had tried all of these diets once by the time I was of age. In addition to my legs, I also discovered that my arms were wider than average. Tank tops have always been taboo. And the appearance of my skin also changed. I had gotten used to the cellulite on my legs, but dents on my arms? I felt disgusted. Because I thought I was just too stupid and too lazy to lose weight.
Pants that no longer fit at the end of the day
As the years passed, I gave up dancing. I studied and more or less lived with going through nasty weight fluctuations from time to time. Shortly before my period I liked to weigh four kilos more than immediately afterwards. And there were phases in which I was sometimes slimmer and sometimes less slim. When I started my first job, I noticed that at the end of a long day my pants were getting too tight and barely fitting. I found myself retaining water and long walks felt like a marathon. Afterwards I often had sore legs and felt weak. As soon as I had to walk a little faster or even run, I felt a pain in my calves and sometimes my legs just closed so that I had to stop or sit down for a moment. I suspected that I was storing water in my legs and went to my family doctor to explain the problem to her: I should wear less tight pants and pay attention to my digestion, then the lymph would drain better and the water wouldn’t be retained her advice. When I searched, Google spit out the disease lipedema. That can’t be it, I thought and closed the browser.
I wanted to cut off my legs
There came a time when I looked at myself in the mirror and just wanted to cut my legs off. More and more women were talking about lipedema in the media and now I could no longer close my eyes to it. Bruises for no apparent reason, high sensitivity to touch, disproportionate limbs but a slim face and waist, heavy legs, doing sports is difficult. In my Instagram bubble I came across a list of doctors and found a promising doctor in my hometown of Mainz, with whom you could also make appointments online. The waiting time was around four months, but we were already used to that from other doctors.
The diagnosis
When I went to speak there, I saw patients with so-called elephantitis who already had to use crutches. I felt bad and thought: “He’ll laugh at me and send me away.” It takes a lot of effort to go to a doctor and say, “I think I’m not fat, I’m just sick.” Because society always teaches us that fat people are lazy and undisciplined and that they are just looking for excuses. And there are also doctors who don’t recognize lipedema as an illness and say to their patients: “You’re just fat.”
But I was lucky. Dr. Bensch examined me in a completely nonjudgmental manner. When I screamed loudly during a pinch test on my legs, he said quite matter-of-factly that this reaction was a sign of the illness. An ultrasound of the legs and arms then provided proof: I had lipedema. At first I didn’t know what to do with this diagnosis and staggered out of the practice with two prescriptions in my hand. Once for compression care and for manual lymphatic drainage against water retention. 60 minutes twice a week. My whole life.
The pain became unbearable
A phenomenon that many lip patients describe is that the pain gets worse after the diagnosis – and that was exactly the case for me. I suddenly paid attention to whether my legs hurt. When I gave space to the pain, it became unbearable and drove me crazy. I had to wear compression garments every day. You can get these custom-made from a medical supply store. Ironically, I was now wearing tight-fitting, constricting tights. The same thing was available again as a bolero for the poor.
Every visit to the medical supply store is frustrating. Firstly, a comparison is always made to see whether the volume has increased or decreased. Secondly, there is always trouble with the recipes. Because a pair of tights costs between 600 and 800 euros and the health insurance companies first want to check whether you are just too fat. For the first care, they first send everything to the medical service of the health insurance companies, or MDK for short. He uses pictures and reports from the doctor to check whether you really suffer from lipedema.
Who checks this? An ophthalmologist, sometimes a general practitioner. Everything but specialists. And they make life difficult for some patients. In my case it took six weeks until I had an acceptance. I am entitled to two benefits per year. Considering that these have to be worn and washed every day, that’s next to nothing. Many women stand and wash their tights every evening, throw them in the spin machine and hope that they are dry the next day. Personally, this takes away from my quality of life and the pain is only minimally improved by wearing it.
The path to surgery
It was clear to me that I wanted to have an operation. Many women are afraid of such a procedure. Lipedema surgery differs from classic liposuction. There is a risk that the lymphatic system could be damaged and that would only worsen the symptoms. So you have to go to a specialist who can perform circular suction around the lymphatics. In the best case scenario, all diseased fat has to go. But at first glance you can’t really tell which fat on the body is sick or healthy. The result is never really as uniform as with cosmetic surgery. Most patients, like me, hardly care. I just wanted to get rid of my pain. The fact that the legs then look a little slimmer is a positive side effect.
So I went to my trusted doctor, who also operates, and got advice: 5,500 euros per operation, two for the legs and one for the arms.
I can wait a long time for the health insurance company to cover it: an operation will only be covered if the worst stage, i.e. stage III, has been reached. To do this, you must have a BMI of under 35, so the woman can only be slightly overweight. Complete nonsense. A woman with an advanced fat distribution disorder is automatically overweight. After years of fighting and petitions, the Federal Joint Committee (GBA) began the “Lipleg Study” this year to find out whether liposuction really helps with lipedema. Results are expected from 2024 and after that it may be hoped that health insurance will cover the expensive operation. There have already been delays due to the corona pandemic, so affected women do not need to hope for timely study results. Until then, the health insurance company will continue to cover my tights twice a year for 635 euros and lymphatic drainage twice a week for 50 euros per treatment. However, I paid the 11,000 euros for the operations on my legs myself.
Not a walk
The health insurance companies argue that liposuction is cosmetic surgery and I can say with complete conviction: this operation is not a walk in the park. I first had the outside of my legs and then the inside of my legs operated on while I was in twilight sleep. First I was injected with a so-called tumescent solution. It dissolves the fat cells and at the same time acts as a local anesthetic. An hour later I woke up in a cubicle with plump legs that resembled melons and were ice cold. With my feet almost bursting, I chattered my teeth for another hour because I was freezing – despite the blanket and the heating vent. Afterwards I was allowed to waddle like a duck back into the operating room, where everything was sucked out of me. In between I was woken up and told to turn around myself.
The last time I woke up, I felt my puncture holes being stitched up while a physiotherapist was doing lymphatic drainage on me and then bandaging my legs. During the second operation, my tears were still streaming on the table – the pain was almost unbearable and I knew how long the healing process would take. All the frustration about the pain, my appearance, and the cost just came rushing out and I cried uncontrollably.
I’m glad I went this route because my pain has improved significantly, even though I still rely on compression and lymphatic drainage. Nevertheless, the diagnosis of lipedema is close to hell, not only because of the pain, but also because meaningful help is denied or made very difficult – even though it would actually be worth it in the long term.