When pain makes you strong

By Sarah RaparoliLex Kleren Switch to German for original article

Lipedema is a painful disease that is hardly talked about. Four women talk about their struggle for recognition and support. They want to encourage those affected to join them in standing up for their rights.

"You are too fat" or "Just do more exercise" – just two of the many statements that keep coming up during the conversation and are confirmed by everyone present nodding their heads. Those are comments that were constantly thrown at these four women, comments that some of them still have to listen to. Wendy, Irène, Gaby and Martine are not "just a bit on the heavy side" or "just have to exercise a lot". Even though there are no official figures for those affected, as is so often the case – it is estimated that one in ten women in Germany is affected. The women just mentioned are among those who live with lipedema. Lipedema is a chronic fat distribution disorder that occurs mostly in women at the onset of puberty, during pregnancy or with menopause, so-called phases. Research has been going on for years, but the causes of its development have not been clarified beyond doubt. It is also assumed that there is a genetic predisposition, i.e. that lipedema is inherited.

The definition becomes more tangible through the individual experiences of the interviewees. "You stand there, your legs hurt so much and feel infinitely heavy. The gentlest touch can be too much. I come home in the evening and just cry because I am in so much pain. I have no other option but to cry." Wendy keeps fighting tears throughout our conversation. The suffering and despair are clearly visible, unlike the pain that only she feels and which is difficult for outsiders to grasp. The various treatment options can only alleviate these symptoms. In many women, haematomas, hardening of the tissue and an uneven skin surface are clearly visible – one of the many reasons why Wendy avoids shorts and summer skirts.

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