Experiences with lipoedema and lymphoedema "I am grateful to have experienced all this. If I hadn't, I wouldn't be the person I am today and I wouldn't be able to encourage other people."
Jana Crämer is an author, social media star, music manager and self-confessed motivator. In her latest book "Jana, 39, ungeküsst" (Jana, 39, unkissed), she explores her condition lipoedema and lymphoedema. As the face of our current design campaign, she wants to inspire other sufferers to stand up for themselves. Since the publication of her novel "Das Mädchen aus der 1. Reihe" (The Girl from the 1st Row) in 2015, Jana Crämer has been performing readings in schools alongside musician and best friend Batomae, and raising awareness about the consequences of bullying and eating disorders. An interview about authenticity and empowerment.
Ms Crämer, your first novel contained autobiographical elements. Were you psychologically coming to terms with your past with your current book?
"First and foremost, I wanted to help other people who were in a similar situation. After years of being desperately sad and not at peace with myself, I had finally found myself in my life - I was completely content and happy. I had made the most of past experiences and wanted to share my story to encourage others. When I started writing 'Jana, 39, ungeküsst', I didn't expect the process to push me to my limits as it did. Writing has always been a form of therapy, but letting go and reliving some situations many years removed was both stressful and liberating. Coming to terms with my younger self at key moments in my life was particularly draining."
Are you referring to the scenes in which you gave your younger self the "reality check" that you would have needed back then?
"Exactly! I took the worst situations of my life that I could remember. In writing them down and examining them, I was able to make peace with them. When I think back on it today, I no longer feel sad or hurt – I am grateful to have experienced all this. If I hadn't, I wouldn't be the person I am today and I wouldn't be able to encourage other people. I see it as a privilege! I had to go through this process to be able to adopt a positive perspective on things. I moved away from negativity to a more constructive, hopeful mindset and attitude!"
Diagnosis of lipoedema and lymphoedema: treatable but not curable
Were you able to deal with the diagnosis of lipoedema and lymphoedema in this positive way in 2020?
"Honestly, no! At first, my world collapsed. I did get comments from followers before I was diagnosed that I might have lipoedema and lymphoedema and should get it checked out. But I was convinced that I just couldn't eat healthily and normally. I remember one performance in particular at a lipoedema and lymphoedema event in 2015. My best friend Batomae and I were invited to a reading on the topic of 'eating disorders'. Before our talk, a young woman told us about her condition – I was so touched and moved by it that I ran out of the hall crying. I thought, 'What if I have that too? How can I deal with a chronic disease that can be treated but not cured? So I pushed the prognosis far out of my mind."
Lost 100 kilos – but hardly any from the legs
How did you get the diagnosis then?
"At my heaviest, I weighed 180 kilos. I was totally isolated - and when I was in public, I would eat salad so that I didn't appear to have an eating disorder. It was only after confiding in my friend Batomae by email that I was able to talk openly about it and address it head on. As a result, I lost about 100 kilos - although hardly any from my legs. I then took the community's frequent comments to heart and got a referral from my GP to see a phlebologist. Her diagnosis was clear: lipoedema and lymphoedema.
She prescribed me manual lymphatic drainage and medical compression stockings. I was absolutely stunned and immediately called Batomae. He just said, 'And? It doesn't make you a different person. Nothing has changed except that you have some clarity. Now you know what treatment options are available and what you can do to get better.' And he was right!"
Was that the turning point at which you were able to deal with your condition confidently?
"Yes! A few weeks later I was at a party and was asked about my new flat-knit medical compression stockings, and whether I had sick legs. I gulped and then spoke clearly, 'No, they are not sick legs - my legs have a disease!' It was the first time I had defended my body and taken sides with it – it was an incredibly beautiful and impactful moment for me! I don't let anyone say anything negative about my body, my stretch marks, my skin or my apron belly. Except on the internet, where I don't care. But if someone is facing me, they have to deal with my reaction."
Since then you have been trying to raise awareness and educate the public about lipoedema and lymphoedema?
"It's a big deal for me! I will never tire of talking about it, answering questions and debunking prejudices. Unfortunately, lipoedema and lymphoedema diagnoses are still not well known enough – awareness needs to be raised among the public and also among medical professionals. I am very lucky to have received excellent comprehensive advice at my medical supply store and to have found help in many places. At the beginning, for example, I wasn't aware of how important the right skin care is – and I completely let it slide. My skin was very dry and stressed from wearing medical compression. I now use special sprays and creams that nourish the skin with essential ingredients to keep it supple and healthy. Besides good advice from a medical supply store, the solidarity and exchange in the community are valuable. Now, I'm even being approached by followers who don't have a condition about where they can buy the cool 'stockings'. When I explain that they are custom-made medical compression stockings most of them are surprised."
mediven flat knit: the new side stitching means that no one can tell it's a medical aid anymore
You often wear your flat knit garment with just a top. Why do you avoid skirts or trousers?
"Why should I put another pair of trousers over the top? I'm pretty pragmatic. My flat knit medical compression stockings from medi are opaque, like leggings. And with the new side seam, which has been available for order since October as an alternative to the rear seam, no one can see that it is a medical aid. And even if they did, who cares?! They look really chic! The colours and patterns can be mixed and matched with my everyday wardrobe and make me feel good. And the best part is that since I started wearing my medical compression, I have noticeably less pain. The knee function zone, which my specialist at the medical supply store recommended to me, is fantastic too! It means I can move more flexibly and my medical compression is more pleasant to wear – which is super practical as I travel and move around a lot."
"I feel better with and in medi products"
You will also be one of the faces of the mediven design campaign for the first time this year. Why did you choose medi?
"I do very few collaborations. I'm not a classic influencer – nobody should expect discount codes from me or advertising for products and companies that I don't 100% believe in! It is important to me to be totally satisfied with the product and the company and to be a fan! But the best products are worthless if employees do not stand behind them and do not live the message that the company represents to the outside world. That's what convinced me about medi! From the initial contact with the product marketing managers, who approached me for the campaign, to the operational management and the shooting of the campaign, everyone is so enthusiastic about their work and improving the products for us users. Everyone is committed to the marketing promise 'I feel better' and does their bit to make it a reality – for the benefit of us patients! I can confirm: I feel better with and in medi products!"
The campaign motto is "unique together" – how does the mediven campaign reflect you?
„The mediven range of colours is a byword for joie de vivre, the opportunity to unfold your own unique personality and a vibrant community. I think this reflects me perfectly and I can completely endorse the message! It is important to stand up for yourself with confidence and also celebrate the solidarity in the community. For me, it is always great to see other sufferers using medi products and to be able to talk to them. You automatically have a common ground! It's like wearing a band shirt: it's both a sign of recognition and a love for a particular thing – it connects.
Which mediven colours do you like best?
"The two new trend colours sage green and lilac are easy to mix and match and can be easily integrated with your existing wardrobe. You can use them to create understated looks with neutral beige or white tones, or exciting outfits with more vibrant shades like bright orange or pink. Personally, I'm also a big fan of the colour magenta, which has now become part of the standard range for flat knitwear. At my book premiere in Berlin, I wore medical compression stockings in magenta to match my book cover. And because of the campaign shoot in Hamburg, I am now also more willing to wear clothes that I hadn't worn before. I was surprised how good they looked on me and how comfortable I felt in them. The ambience and the good spirit on the set helped me to leave my comfort zone and try out new things. I'm a happy, positive person and I want my clothes to reflect that!"
As a final tip, what advice do you have for other sufferers?
"Do not be ashamed and make peace with your conditions! There's nothing to hide! You are amazing just as you are! Take care of yourself and your body and don't care about what others think! Be grateful for the little things in life! I am always filled with a sense of humility and joy when, for example, I see the sun's rays slowly breaking through the cloud after a thunderstorm. And I enjoy the beauty and tranquillity of nature on a walk in the forest. We don't need to justify ourselves to anyone or anything or live up to any expectations. We are entitled to be unconditionally happy with ourselves and for ourselves!"
Thank you very much for the open, honest interview and for telling us your story!
