Pain is invisible - lipedema doesn't have to be seen, but felt

On March 19.03.2020th, 10 I was really seen on television for the first time. I got the chance to be on the TV show “The Dr. Wimmer Show ”for lipedema education and, above all, to encourage guests to be a guest. An indescribable honor, because up to now mostly severe cases and especially women suffering from severe suffering have been shown. I have had an operation myself, but unfortunately not free of symptoms and have endured the lipedema pain in my arms and legs for almost XNUMX years.

Of course I am not exempt from suffering and frustration, but as you hopefully know me well enough, I prefer to run on the Sunny side of life, because I am very attached to this one. My top priority is to be happy and I use all of my energy to find my way back to exactly that point if things don't go so well.

Here is the result: https://www.sat1.de/tv/die-dr-wimmer-show/video/14-lipoedem-wenn-fettzellen-ausser-kontrolle-geraten-ganze-folge

Bad blood from within your own ranks

Now this show ran and with complete success. I have probably never received so many wonderful and touching letters. Because I not only had the opportunity to talk about the disease lipedema, but also to convey that, despite this, you don't have to forget to smile. Everyone agreed with me, except for one negative voice, which made me boil with rage in my shaky state during the broadcast.

Since I respect the private chat and do not publish it, I summarize your arguments here to clarify the motives for the resulting action #schmerzistinvisbar:

It would have a fat woman with one real Lipedema should be invited.

When I see your legs, as an outsider, I can't take this disease seriously, that would only work with heavily affected people.

Not every fat woman just has obesity, but this disease.

Es wird again just presented a slim woman, with beautiful legs, and that's not lipedema.

If you already report about the disease, then you should show really bad people affected by lipedema legs.

A reader who has no pain and still has bad lipedema. In her opinion, not all lipedema is painful.
lipedema fashion pain is invisible caroline sprott

I'm fat AND I have lipedema

I need one night to brood over the decision to pick up this one voice and actually offer it a stage. In the end I had to do it because it's not just a voice, but this opinion is anchored in far too many minds. An Instagram live stream was needed (which unfortunately I can no longer show you here).

In short: Lipedema and obesity are two different diseases and both need separate therapy and treatment. This is best done accompanied by a doctor and above all with a huge cap full of self-management. 70% of those affected by lipedema are obese, but you are not necessarily overweight because you have lipedema. Lipedema is an independent disease that affects some fat cells in the body, but still leaves some healthy fat, which can also be combated by a targeted and controlled change in diet. A size 36 can be as affected and painful as a size 56 and it is presumptuous not to accept this. People take the risk of judging the condition of other affected people from the same boat and work so precisely against their own interests:

Acceptance, tolerance and being taken seriously.

#painisinvisible

I'm tired of it I don't see myself being questioned in terms of my perception, my character and how I feel about pain. There is no right to do this just because I'm on the internet.

But that's not my way of reacting so sharply and spraying negativity and anger, but I'm responsible for the positive. For encouraging, giving strength and, above all, for entertainment.

Women's affair Ambassador Kathi and I exchanged lively and motivated discussions on this topic and we spontaneously came up with the idea of ​​starting an action to focus on the most important symptom of lipedema: pain.

You can't see pain and yet it's there, thin, fat, big, small, old and young. Migraines, cancer, rheumatism, fibromyalgia and so many other diseases whose limitations have to be justified all the time. It's time to raise awareness together.

You can also read Kathi's two articles on the subject:

My challenge - we give pain a face

You see my smile, my body and my good mood. What you don't see is what I've done for it, how much I do for it, and what decisions I make about it every day.

#painisinvisible is an action for everyone who has had to justify their diagnosis, chronic illness or weakness and want to set an example against this discrimination. 👊🏻💥

Whether with lipedema, migraines, rheumatism, cancer and many other invisible diseases - sick is sick. Whether fat, thin, old, young, advanced or early stages. We are all in the same boat and we all want the same goal: a good life. How we get there, we work out together in the # lipedema community every damn single day.

Life is an effort.
Happiness is a choice.
Pain is invisible.


❗Everyone affected is cordially invited to join this campaign and set a very clear signal. Links 👉🏻 me and 👉🏻 @_akillya_ so we can share your posts! ❗

lipedema-fashion-outfit-purple caroline sprott

Author: Caroline Sprott

I'm Caroline, born in 1989 and live in Augsburg. Why did I start the lipedema fashion blog? At the beginning of my diagnosis I was completely helpless before an uncertain future. Now, a few years later, through active participation in self-help groups and a lot of research, I have accumulated a wealth of experience that I would like to make available to other affected persons in one place - without the detour via private groups on Facebook. The fashion component is of course due to my hobby. At the time, I promised myself that I would never be restricted by compression stockings. This attitude gives other patients courage and so Michaela advised me to start a blog.

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  • It is sad to read that someone who is “not visually” affected is approached in this way. Unfortunately, I also know - especially on the Internet - that as a "slim" lipoedema patient you are not taken seriously and still get bad accusations.
    A lot of work would have to be done to finally get the image of the "typical" lip patient out of people's heads ...

    Lipedema knows no weight. It doesn't matter whether it's 50 or 300 kilograms ...

    Thank you for your words. Maybe we slim (er) lip girls will be taken seriously.

  • Live Caroline, I had seen you on TV and I found it admirable how you presented our illness and did not gloss over anything. It is all the more regrettable that you get such comments because of it. It should be as always: only someone who is in the skin of the other can fully understand which package the other has to carry. You puff your package with a smile - don't let anyone spoil it for you.

  • Dear Caroline,
    Thank you very much for your commitment (and that of all the other fighters. I know the prejudices myself and I am fat. After decades of diets and nutrition plans, constant weight control, I have put on weight again and again, why? Again and again, MS attacks come in between, a lot of Cordison and severe restrictions on movement and then worsening of the lipedema and I admit hunger pangs during the high-dose Cordison. To cut a long story short, no matter what illness you have, you will always experience hostility and it burdens you or makes you really angry. You make and do and read then something. I can tell you today: You have arrived at the doctors. Today I received a printout of your blog from a general practitioner with the words: Take a look. Keep up the good work.

    • Dear Petra,

      Your message touches me so much that you may not even be able to imagine. I founded this blog with the heartfelt desire to show fashion as a therapeutic approach, but also to help those affected in life and dealing with lipedema (and basically any other chronic disease). Your feedback is exactly what gives me the energy to keep going. I thank you from the bottom of my heart. 🙂

      No influencer stuff, no likes, no followers can replace when you first arrive in the student council and with those affected, where you can be a real help.

      Many greetings and all the best
      Caroline