10 lipedema thoughts that a sufferer never utters

Lipedema thoughts

  1. Why are there mirrors everywhere?

    On the doors of department stores, in the aisles of the shops, car windows, glass doors in which one reflects ... there are days when I can take it all well. I feel great about them, have self-confidence, get along with my body and I am pure. But there are those gray days when the bathroom mirror is just too much.

  2. I ask my girlfriend if I look fat in my jeans.

    “No, it fits perfectly.” I get the answer. Does she say it because she means it or maybe she just doesn't want to hurt me? ... who can I still believe ...

  3. Pain, my legs hurt.

    You are heavy. Whine? It's out of the question. It means being strong. Always be strong. When I bring up the topic of lipedema, everyone just thinks I'm fat and imagines it.

  4. In the department store I see a pair of jeans that I really like.

    I grab them Pants in one size that usually suits me. I examine her passed out. Even my forearm doesn't fit into this pant leg. When I enter, I hang you back ...

  5. The looks of others bother me.

    I see them eyeing me. You see mine thick legs .... They judge me without even knowing me. I can see it in your eyes. That's worse than 10 stab wounds in the heart ...

  6. Why me?

    Why do I have to live with this disease? I know that there are much worse things, worse illnesses, worse fates, and yet I can't avoid asking myself this question. Another question that I should never say out loud ... a lot of people just don't understand the agony behind the disease.

  7. Suddenly a stinging, a pulling ... is it getting worse?

    Is it a boost? Will I experience my blue miracle the next time I am measured? That scares me.

  8. Many have written that it gets worse during pregnancy.

    The thought of having a child is not so far away and I know that it is a gift. But I'm wondering how it will be ...

  9. Nobody really understands me.

    Not even those affected themselves. Somehow it's always about whether someone can add something. Who is doing the "worst"? The whole thing wears me down. I have the feeling that I shouldn't be sad because I don't have it as "bad and pronounced" as someone else.

  10. I sit in my chair and look down at myself.

    There are two parts of the body that bother me a lot. Why is my body turning against me? One constantly hears "Accept yourself as you are" - sometimes it works, sometimes it doesn't. I can't blame myself for not being able to accept who I am ... not another negative point. So I try to enjoy the good days. Enjoy it - to the fullest!

I finish this post with no further frills. No further words are needed - my lipedema thoughts.

All the best!
Anja

lipoedem fashion anja portrait pregnancy lipoedem

Author: annichen1989

I'm Anja and I was born on February 10.02.1989th, 2 in Schwedt an der Oder. So I come from beautiful Brandenburg. Professionally, I work as an office communication clerk, I support XNUMX companies with my workforce. I also work as an artist in the field of manga. Dear Caroline invited me to participate in this blog. I enjoy sharing my thoughts and I hope that this will also make our disease better known.

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  • Dear Anja

    My daughter Lara is 17 and found out about 3 months ago ... we found out that she has lip / lymphedema.
    Lara had suspected this for a long time and decided not to take the pill anymore. Then came the examination in the vein consultation hour. Since then we've been trying to deal with it somehow. I read your article and it spoke to me from my soul ... even if Lara is actually the one affected. I've been feeling such anger since yesterday. I tried to google a gynecologist with experience of this clinical picture in relation to the topic of contraception ... how it is in the www one info gives the other and in the end this solitude with this topic was revealed to me ... those affected are simply there with the diagnosis . This is what makes me so angry right now. How should a 17 year old see that? ..
    I don't know, but I felt so addressed when I "landed" on your link, so I just had to write to you.
    I'll try to find a self-help group, let's see what happens.

    Best regards Natascha

    • Hello Natascha,

      Nice that you found our blog. I am very sorry that your daughter received this diagnosis. Please don't lose hope.

      We even have an article on the subject of lipedema and the pill: https://www.lipoedemmode.de/die-anti-baby-pille-und-das-lipoedem/

      As a tip I can give you facebook. Sounds banal, but there are many self-help groups on Facebook on the subject of lipedema. There you will get a lot of information that will help you further.

      I wish you and your daughter all the best!

      Anja

  • Hi Anja,

    I'm Lisa, I am 23 and have known that I have lipoedema and lymphedema for three years. With your article you speak to me from the heart. I know the subject when shopping and buying pants. I like to dress conspicuously, like to try out new styles and then ask my circle for their opinion and then often ask myself whether this enthusiasm is real or whether it should only be as protection for me.
    Also the stinging and pulling, the sudden pain that sometimes comes out of nowhere. I don't always want to feel sorry for myself, but you reach your limits.
    I want to thank you for your article because you put what is in my head into words!
    Thank you! Lisa

    • Dear Lisa,

      I am very happy about your comment. Sometimes it is not easy to come to terms with the whole thing, but I wish you a lot of strength. You can do it! We are all in the same boat - you are not alone!

      Best regards,
      Anja

  • I know all too well about getting pregnant. Actually, I always wanted to have children. But after I know that it has gotten worse for many, I pushed the thought sooooooooo far away ...

    • Dear Daniela,

      It hurts my soul to read this. I hope and wish you very much that you dare to take the step at some point. We must not let illness rule our lives. I still understand you way too well.

      All the best
      Anja

  • When I was 50, I was diagnosed with lipedema. I had never heard of this disease. But I was grateful that a doctor finally took me seriously and didn't redact me to my massive excess weight.
    I already felt the pain when I was 20. "Take it off, then it will go by on its own." 30 years had to pass before I was taken seriously.
    I live in the UK (for 10 years) and the medical care here is far worse than in Germany. I feel left alone. I look for any information myself. I seem to be the only one affected.
    And that's why I'm happy to have found this blog. Knowing you are not alone is worth so much.

    • Oh dear, that really doesn't sound good. I've heard from many that the situation abroad is desperate. But you are really not alone and together we are strong!

  • Hallo,
    I know these thoughts all too well.
    I got the diagnosis last year. A good friend of mine also has lipedema and took a cure last year and also attended many lectures. Then she advised me to go to her phlebologist and have it checked up because my arms and legs look like the typical early stage. And Bingo Lip / Lymphedema Level 1 ..
    Above all, I know thoughts 5, 6,9, 10 and 1 only too well. Ok, I'm level 3, I don't look like level XNUMX, but it's just bothering me. My husband didn't understand. His first comment was: Ok the most important thing is that it's not life threatening.
    Yes of course a life threatening diagnosis would be far worse. But it doesn't have to carry the compression either. Sometimes I could just break Such a shit… Sorry but even after a year I haven't come to terms with it and really have to nibble on it. Above all when my slim colleague in a short skirt and high heels stands in front of me and says: I'm glad I don't have something like that. I also want to wear high heels (I can't walk on them and my feet hurt after 2 seconds) but I notice what I'm not allowed to do anymore. One should love oneself. How do you do that when you only notice the bad things?
    gruß
    Steffi

  • Hello Anja.
    Well, I can't add anything more to these thoughts. I know her too. However, it is good to see that I am not alone with it.

    @ Steffi: what are you not allowed to do anymore?

    A lot of strength and positive thoughts to you.
    Bommel

    • Hello bobble,
      I am no longer allowed to wear higher shoes. This would disrupt the lymph flow even more.
      Plus, my feet get fat immediately.
      I also don't have the courage to wear colorful compression like other people to combine it with dresses or skirts.
      I'm probably standing in my own way again.

      Kind regards
      Steffi

  • Hello Steffi,
    oh, I didn't know that about the heel. I also wore high heels, but don't put them on anymore because I don't find them comfortable anymore. I now see the stockings as a good opportunity to make my look different, more feminine. I haven't worn skirts for years because of my legs. Now I'm wearing them again, because of the stockings and because I don't want to sweat myself broken. People stare anyway, whether because of the legs or the stockings ... At first I thought that everyone could see what kind of stockings they are. I've found most of them don't know. What I miss is walking barefoot and flip flops. You dare!!! It doesn't matter what others think, the main thing is that you feel good.
    LG
    Bommel

  • Anja you are very pretty you have a great charisma and that you are a great personality, I have no doubt about that. Please see your positive sides not the disadvantages of your illness. Glub to you stand by you. You have every reason not to others .They have completely different quirks .You alone are important. Everyone else can be the same to you.! By the way, I'm in the same situation. All dear Sigrid