Step by step, like a puzzle

I am Lisa, soon to be 23 years old, have been suffering from first-stage lipoedema since I was 15 years old and for about 2 years I have had pain not only when I touch my body, but also in everyday life and without any specific trigger.

I first diagnosed myself because my doctor didn't know anything about it and I was officially diagnosed at the age of 17. Throughout my school years, I always wondered why it hurt so much to sit on wooden chairs or church benches, why it hurt so much when a classmate punched me in the arm for fun, or why I preferred to get a 6 on the uneven bars before banging my thighs against the bar again in pain. Why my legs were so often bruised even though I hadn't bumped into anything. Eventually I got my answer with the diagnosis "lipedema".

When I was thinking about shame and bullying for this article, the first thing I thought was "OK... I know shame all too well in relation to my lipedema, but thankfully I've never been bullied". But then I had to think back and revise my thoughts. Bullying did happen, but not necessarily at school by the "bad" classmates, but much more in the medical field. I was accused of having made the diagnosis myself for the sake of attention, as if I was using compression as a health insurance benefit for fun. I was largely reduced to my appearance, I was denied pain because my legs "don't look that bad yet" and "as a young woman I still want to look attractive and pretty in a summer dress", which according to this doctor would no longer be possible with compression treatment (spoiler: it is!).

One physiotherapist almost told me not to have lymphatic drainage, despite my prescription, because he thought I was imagining the pain. He went on to say that I was being "punished by God" because it would only get worse from now on. Apart from the fact that many of the people I spoke to seemed to have no idea of the clinical picture of lipedema, I am still shocked by the way a young woman (a 15-year-old girl at the time) was treated and how the focus was on her appearance rather than the pain.

But these conversations were just another piece of the puzzle that made me feel more and more ashamed. Not only did I feel less and less taken seriously, but I became increasingly insecure about my appearance. In the summer, my thighs rubbed together painfully, the heat brought other symptoms such as heavy and dragging legs, and I felt completely uncomfortable in clothes that were longer than a certain length. I know this can be difficult for many sufferers to understand (even for many non-sufferers) because I am only in the first stage. But when I've had to deal with really inappropriate and hurtful comments in the early stages of my condition, I can't imagine how others feel.

I was ashamed of the shape of my legs, the increased girth and the fear of what others would think of me.I am ashamed of this thought too, because what does it say about my own perception? Why should my legs be less beautiful to others just because they are bigger? Why do they have to be anything at all to OTHERS?I felt ashamed in front of new partners because I felt they didn't take me seriously, didn't find me attractive or didn't believe that even the slightest touch could cause pain. I was also embarrassed by the compression at first. I am a very fashion-conscious person who likes to express myself through my clothes. Wearing a full compression garment on my legs was initially a hindrance. But I also learned to deal with it, to adapt my outfits to it and to stand by it.

Even among my friends, I was sometimes ashamed of the limitations I had because of my lipedema. I didn't go walking because I was afraid I wouldn't be able to stay on my feet for long. At work, I find it difficult to sit for long periods, but also to stand for long periods, and I'm only 22 years old. Shame is often my constant companion, but it is becoming less of a problem as I learn to stand up for myself and my condition and do something about it.

In 2022, I addressed this topic, which falls under the “bullying” category, in my bachelor's project “LIP OH DAMN”. After the project was published, many of those affected contacted me and told me about the nasty comments they had already had to listen to. Even during the video shoot, a passer-by came by, got off her bike and told our models: “You're lucky you don't look like that in real life”. Many found the visualization of the disease in abstract fashion pieces to be a very vivid way of making the pain visible to others.

I still don't find it easy to deal with comments like these, and mind you, they are certainly "harmless" statements, but they hurt me, especially when there is no understanding, but prejudices and assumptions are made purely on the basis of appearance. A big problem in my eyes is the lack of awareness of the disease, but also a huge internalised fat phobia that our modern society is equipped with.  Anything that does not fit into a 'perfect appearance' is unwelcome and condemned, even in times of supposed 'diversity'.

It's nice to see that the communities are often very supportive and caring towards each other (of course there are exceptions). What helped me a lot was my bachelor's project, where I tried to raise awareness of lipoedema so that people who don't have it can understand the symptoms and effects more easily and walk around with a more open and perhaps less judgmental view. It has helped me to admit that I am one of many people affected. I stand behind my feelings and sensations and fight for destigmatisation.

It's not always easy and sometimes I don't have the strength to do it, but just the thought that more awareness work could possibly lead to more development and progress in medicine and help those affected to get their diagnosis and help sooner makes things a little easier. I am working on accepting myself more and giving myself and my body the time it needs. My body is more than just an appearance for others, it works every day and fights with and for me against this disease.

I would have liked my gynaecologists, and especially my GPs, to have been better informed and to have taken my suspected lipedema into account.

I was lucky enough to already have some information about lipoedema, as I have a family history of it. Through a lot of personal initiative, I was finally referred to a phlebologist and had to fight for compression myself to convince the doctor of the benefits. I realised that this was new territory for her. I would have liked them to at least look into it or find out more about it after I brought it to their attention, but that was also unsuccessful. As a result, I never really wanted to ask them questions because I had to answer them myself through research. In principle, I would like to see a lot more research done on the subject, studies presented in an understandable and accessible way, and more and more attention paid to it in the media, which was also one of the aims of my "LIP OH DAMN" project.