A man in compression: 45 years of concealment, hiding, silence

If I remember back, in our parents' house across the street from us, a stout older woman had fat legs. She had reddish hair and a thousand freckles on her face. Honey was always nice to us children, called us over and gave us sweets. Then she complained every now and then about her heavy fat legs, which were also wrapped at times. She was a human soul.

At the age of 13 everything changed

As a little boy, I had no idea at the time that a few years later I would feel the same, because in puberty - at the age of 13 - I had to leave mine overnight normal Say goodbye to your legs.
I was known in the village to walk around in greasy lederhosen or to hop through the puddles in summer rain with swimming trunks and rubber boots.

With the outbreak of the first Erysipelas At the same time on my right and left lower legs and feet at the age of 13, I would have been going “hops” soon.

At the time, the doctors couldn't do anything with the high fever, chills and hot, bright red legs. The legs were full of water, bulging and the groin (lymph nodes) hurt. After about ten days the inflammation had significantly decreased, but the fat legs remained - unfortunately forever!

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Farewell to the "short pants" and "Bermudas"

From now on I ran the gauntlet in the swimming pool during swimming lessons so that one would not be ridiculed by classmates. I used to paddle into the swimming pool or the lake with every ray of sunshine, now I hid my legs with a long towel and went straight into the water so that no one could see me. After swimming my legs were a little thinner. Nevertheless I hid her, crouched cross-legged in the meadow. Queuing at a french fries stall with swimming trunks - and everyone stares on their feet ... never! I avoided the same thing when queuing for the water slide or diving board.


When buying shoes, that was another thing, the saleswomen clapped their hands over their heads:

"What fat feet and legs do you have!"

So I avoided the sellers. Little has changed to this day. I don't like to talk about my illness or show my fat legs. In summer there is always a need to wear shorts or Bermuda shorts and chic sneakers. Or to ride a bike with 3/4 pants - unfortunately that's not possible for me.

There are islands as small as rehabilitation stays, where patients talk about the illness, how to deal with it, tips ... Although I was never able to find the same case of illness as I have. Primary lymphedema of both legs, inherited, genetic.

medi story caroline sprott lipedema lymphedema lipedema lymphedema compression compression
The man in compression, third from left

Here I am, the man in compression

In autumn 2017, a Medi employee contacted me and asked whether I would be willing to write about my illness and, if necessary, submit photos. Well, writing works, but photos of the legs? I had to think about it first. And then I wrote vacation in the middle of Thailand. Yes, I actually attached a photo of where I'm sitting on the bed and putting on my compression stockings after taking a shower. I was really brave there.

Medi asked me later if I would be willing to take part in an advertising campaign in Munich with other people affected in spring 2019. This included giving interviews and the willingness to be photographed in flat knitwear.

The company triggered something for me. So should I actually have the courage to flaunt my illness? Show my fat legs to the world? Difficult decision, but I wasn't persuaded to do anything, I would set the limits for the shoot.

My uncertainty gave way to pride

It was very clear to me: never shorts, not even Bermuda shorts. I was otherwise not ready for this, and certainly not at a public shoot. I made friends with the fact that a pair of jeans was rolled up, nothing more. Later, when I saw the group on the billboard, I was ambivalent. Is that how it belongs? The perfect fashion world only presents the perfect, and we? We happily show the world our handicaps in a colorful variety. It changed for me and I was a little bit proud of it too.

I don't know why I was or still am so restrained. Maybe it has something to do with performance in society, according to the motto:

"Brakes are for losers."

As a man in compression, do I have to flaunt my illness / disability? Admit to not being flawless? Not fulfilling what society seems to be doing, or is it just a matter of the mind? Why don't I allow myself to stand at the counter at the airport with short trousers, thick legs in compression and a straw hat? Maybe I'll find an answer.

Encouragement

The girls from Medi encourage me or us patients to stand by themselves. About his handicap and today's great ones Colors and patterns the compression stockings. Like a snail, I am getting more and more out of my shell and, as a 56-year-old man, try to stand in compression to my edema.

I would definitely change one thing today: If I could turn back time again and were a young family man, I would ban Barbie and Ken from the nursery. As legal guardians, we specify what is norm and abnormal. In times of inclusion and equality, we should actually be ready to stand by ourselves, to see everything flawless as an individual case. Because who has no handicaps? I personally believe that unexpected doors will then open.


PS .: I would be excited to see their faces if, as a young dad, I had put two mummies in bandages in my children's room instead of Barbie and Ken….

Greetings from Hessen
Jürgen


Questions or exchange at: Juergen.Jakob@t-online.de

jürgen lipedema mode lymphedem man lymphedema

Author: Jürgen Jakob

Jürgen (54) from Hesse, happily married, two grown girls, works for the Giessen Regional Council, Department VII Refugee Affairs. Primary lymphedema of both legs.

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  • Dear Jürgen,
    I read the description of your path of suffering, life and development with great interest and spontaneously thought: “Wow, I am very impressed by your courage and your development. I myself am not affected by the topic, but I experience it first hand with my wife who has lymphedema and always has to deal with the topic of flat knitwear, the right clothing style and how to deal with the problem, for example in extreme heat. Not to mention the great comments from the so-called “friends” who always confirmed that my wife had too much food or too little exercise. Up until now, I have rarely met someone who is as self-disciplined as my wife when it comes to nutrition, exercise or wearing flat-knit compression. Well the outer appearance…. I think it's important, especially as a man, to stand by your handicaps and not hide them and yourself. In addition, in the so-called “men's world” there is far less talk about restrictions or handicaps and the associated feelings than in the “women's world”. Every man who dares to write about himself, especially to write about his inner development and to make this public, helps other men to go the same way. I think we men need this as much as women and it is just good for us! Please do not let yourself be dissuaded from your approach! I wish you a lot of courage and determination!

    Greetings from Franconia
    Andreas