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The lipedema community in particular is like a large, growing family, and lipedema sufferers support each other and regularly exchange information in numerous groups and social networks. This strengthens the sense of community, the experiences of other people affected often help and you feel a little less alone with the problems and complaints of lipedema. I think you can almost say that hardly any other disease is as enlivened by the community and brought into the public eye as lipedema. We can be proud of this and it is only through the power and perseverance of the lipedema community that we are slowly making ourselves heard in public, which this disease deserves.
Whether you are looking for information and clarification in forums fresh after your diagnosis or you want to read reports on experiences with specific doctors, you will find an incredible number of helpful contributions online. Especially at the beginning of your lipedema journey, the exchange with those affected can help you a lot and give you new courage. Proudly sharing before-and-after results after long-awaited surgeries is also part of it. Unfortunately, however, slim patients with lipedema often experience criticism from their own ranks at this point.
Even slim patients often suffer from unexplained pain, volume increase and water retention and no one can help them. We all know this perplexity and also how this pain feels. Our starting position and weight are completely irrelevant. Despite this, normal weight patients are often picked on when they talk about existing discomfort before surgeries or proudly share after photos after surviving surgeries and talk about their newfound lightness. When I first witnessed this firsthand, I was truly stunned. Why not “begrudge” someone this condition and thus an explanation for their discomfort? As if this diagnosis were something to be envied. We don’t want to be judged. Not by those who are not affected, and certainly not by girls who share our fate. The only ones who should really understand how this loss of control over one’s own body and life feels.
But it’s exactly the same for lipedema sufferers, who have more weight than perhaps others with the same body size. Regardless of whether these are a few feel-good kilos or manifest obesity, no one is entitled to judge their lipedema condition. Of course, I exclude all doctors who have medical expertise in lipedema and give their neutral, medically based recommendations. I deliberately write “lipedema expertise”, because almost none of those affected can avoid visits to the doctor where they feel they are not taken seriously and their complaints are dismissed as self-inflicted.
However, I am much more concerned in this post with the community of lipedema girls, perhaps even with society in general. I think at this point I can simply call for reflection and thought. Don’t we often make snap judgments? Without the necessary background or expertise? It is so easy to judge, to evaluate. It is even almost impossible not to judge. It is so easy to give free rein to our first thoughts at the sight of a stranger and to put a label on them, so to speak. However, what is written on this label is shaped by our own experiences and values and basically says much more about ourselves than about the person being judged. Of course, we should and are allowed to give free rein to our thoughts, after all they are the only thing we cannot be judged for, as long as they remain unspoken. But reminding oneself again and again of neutrality and impartiality certainly can’t hurt. Especially if one is ill oneself and wishes to be heard and accepted by one’s environment.
However, written or spoken words go beyond thoughts and can hurt the person much more than we realize. A quickly typed, perhaps well-intentioned piece of advice on a cell phone can make the recipient of our message or comment feel attacked or hurt. We don’t know the other person’s story, especially in the age of social networks, and often only see what is consciously presented to us – with a filter. It is therefore very easy for us to unconsciously and “accidentally” rub salt into wounds and then wonder why the response is so rude.
At this point, I would simply like to remind you and myself of the “Golden Rule” of practical ethics: “Treat others as you would like to be treated by them. In relation to lipedema, for me that means it knows no age, no weight, no size and has nothing to do with socio-economic status. We may not all suffer the same, but we do suffer and we have that in common. Have a great day and all the best on your lipedema journey.
Are you still looking for a lipedema specialist near you or for an open ear for your worries and thoughts? Then conveniently book an appointment online now with our LIPODOCS or with me, the LIPOCOACH®. 😊 We look forward to meeting you!
From LIPOCOACH® | Pia
From LIPOMOTION | Mabelle
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