It's a serious issue. It's something that moves me and the entire lipedema editorial team. It's something that many of us struggle with. It is something that many do without thinking about it.
Excluding - degrading - judging
What is the best way to start such a topic? I'm a little torn. Recently, it has often happened that patients classified other patients as insufficiently ill due to their findings or their physical circumstances.
To put it simply: I myself wear size 36 and am therefore beyond the norm of those affected for many. I am therefore asked whether I am actually ill. You wouldn't see anything. I don't know what real lipedema is. I wouldn't have any problems. I should be happy that I look like this. Consider me lucky. Don't count as sick or affected for many. It was scolded as a fashion disease. It was hated, bullied and judged. And so it is not only for me, but for many other voices in our circle.
Dear lipedema sufferers, there is no better and no worse disease in our disease.
We are all affected by this disease and so we are all the same on this point. For me we are all on the same level. We want to be accepted, demand tolerance from our fellow human beings, and finally demand insight from the health insurance companies. Then why can't we just support each other and give exactly what we ask? It starts with ourselves. I would like to say explicitly that saying “I have lipedema” is no fun to anyone - I don't think you have to ask any further questions.
I find it very difficult to write about it right now and it makes me very sad that we cannot stick together. Why all this? As a unit, we have a lot more opportunities to make a difference. It is no use to marginalize others. Nobody wants that.
Nobody knows what the other has already been through - some of them already know something about me. That I've lost weight through exercise and diet. That a long way and hard work lie behind me and that it takes new motivation every day to get me up. And many feel the same - just don't say it.
Whether over 150 kilos or 60 kilos - if I suffer from lipedema, I have the right to express myself. Stage 1 or 3 - we all suffer from it!
So the first step should be up to us.
I am writing this consciously for the patients who put on a little less weight, who are still at the beginning, who are not noticed. We would like to see a little more tolerance in this area - nobody is in someone else's skin.
I would like to close the whole subject with a saying:
"What you don't want to be done to you, don't do it to anyone else."
Very well written! I find this revaluation and devaluation of diseases very bad ... If someone has lipedema, no matter to what extent, then one can only feel sorry for them.
I also think that we should stick together much more so that we can be strong together and achieve something.
Thank you for your words, dear Anja 🙂
I am very happy that we are of one mind. Hopefully one day we will all pull together 🙂
you speak from my soul ... am stage 1, size 36-38 and about 58 kg. was able to get rid of a few kilos this year, do a lot of sport ... and then i was rejected by the insurance company because the problems "cannot be objectified"! I have repeatedly pointed out that I sometimes have severe pain and, from a visual point of view, I absolutely do not need an operation ... the health insurer was also not impressed 🙁 I'll still have an operation in a month and then I'll start my new life 🙂 thank you for your article! [the haters among those who sympathize really suck! on the one hand, they are much more sensitive if you ask them about weight, for example, and on the other hand, they give out endlessly ... fuck it!]
Thanks for your comment. I wish you all the best for your surgery, lots of strength! I am happy with you that you are starting the step into your new life 🙂
We don't need health insurances that don't help and haters! Tschakka!
Thanks for this article! I keep the info that I have about 10kg with lipedema. I've always lost weight because so many say losing weight is not possible with lipedema, period! Of course the lip fat is still there, but it makes a huge difference to before
Thanks for your comment! I think you can be proud of your weight loss - 10 pounds is a lot. I hope that something will soon change from patient to patient and that we can talk openly about everything.
I've also gotten weird reactions. I myself have lost 2 kilos in the last 25 years and I can definitely do more. "Well then I can't have a lip, you can't lose weight with a lip" is the saying that I get to hear quite often. In addition, I am “not empathetic as a self-affected person” because I am of the opinion that with a little exercise and a controlled diet everyone gets at least the superfluous real fat away, “I assume that others are lazy”. Actually, I didn't fall on my mouth, but when I hear such comments, my brain stops working. In the meantime I hold back and watch the other fellow sufferers and only where I think "she" might need mental support, I tell them my way. Dear Franz 10 kilos are great and a giant step, keep it up. It goes slowly, but the small steps also bring us forward. Sometimes you hang out, it doesn't matter, there have to be times like that. The important thing is to be able to pull yourself up again and carry on. Kind regards Christine
my physiotherapist laughed at me at first when I said my lipedema would go away too. As is well known, belief moves mountains. Three years later he doesn't laugh anymore: Looks like normal legs. “Oh! Notice what? I have never resigned myself to the sentence: there is nothing you can do about it. But you can and even a lot. So, don't be persuaded and stay tuned !!
I still have to ps for the lymph (still !!), but I get by with fewer appointments and I also wear the stockings (still !!!), but I don't mind.
Ok, I think I wrote something off topic. Sorry.
do not hold back with it! Be proud! I lost about 22 kg. Weigh now 63 kg. “Doesn't work” for me!