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."