‘I had lost all my body awareness’

An interview with Jana who received her diagnosis at an early age and has had to put up with a few setbacks since.

Jana is an open and amiable person – her charming smile gives the 27-year-old a carefree and candid appearance. But Jana’s life is anything but carefree: although she went through a marathon of surgeries, her lipedema came back. Now, her arms are affected, too. In this interview, the student tells us how she has been since this setback.

How did you become aware of the lipedema illness?
Even in my childhood, my weight and physical shape were an issue. At the age of 10 or 11, I took part in a nutrition and exercise programme organised by a health insurance company. Up to that point, everyone was saying: ‘That’s baby fat, that’ll change. You simply have to move more and eat healthily, and then everything will be alright.’ A proper odyssey began.

When I started getting my period, I continued putting on weight around my torso. I didn’t even realise I had any problems in my legs. During PE and volleyball training, all the difficulties were blamed on my weight. I had lost all my body awareness. I thought that’s just how it feels if you’ve got ‘a bit of extra weight on your hips’. I didn’t have any comparisons to a ‘normal state’ (anymore). Up to the age of 19 or 20, I kept having countless consultations with various doctors, dieticians and sport experts – and I even went to life/crisis counselling in my teens. Something was clearly wrong about me, after all.

How did it go from there?

One day, my mum came home from work in the evening and a work colleague had told her about this TV report she’d watched – it was about the subject of lipedema, it’s symptoms and treatments. We watched this report together which didn’t only feature experts but also a woman who suffered from lipedema – and for the first time, I felt like someone appreciated and understood my struggles. From that day, it did take another year until I got my diagnosis as the marathon of doctor’s appointments continued.

When did you get your diagnosis?

I got my lipedema diagnosis back in 2011. I even had this confirmed by two different doctors as I had gone through so many ups and downs and just wanted to know for sure. So, it’s lipedema. That was a shock, on one hand, but a relief on the other. I finally knew that it wasn’t all because of something I’d done wrong.

What annoys me is not knowing which part of my body is in fact lipedema and which one isn’t. Which part can be influenced and which one cannot.

But then I suddenly started having symptoms again on the entire back of my leg, right up to my bum. This sharp, tingling and often localised pain was all too familiar and I knew – it was back … along with the question: ‘Is that my own fault?’

Your Instagram account says ‘2018: setback’. What does this mean exactly?

In the years after the liposuction, things weren’t quite as easy as I’d hoped for, unfortunately. It wasn’t so much because of the liposuction, but just because life happened – sometimes, life just writes its own story and you can’t really control it. After I’d successfully completed my vocational training in summer 2015, I started my degree. This allowed me to have an even more flexible everyday life in terms of diet and exercise. I finally discovered a new fighting spirit for sport again. For the first time, in early 2016, people said to me: ‘Wow, did you lose weight? You look different somehow!’. And the best thing: they were right! I could feel the weight loss, too, and saw it on my clothes. I was on my way to a new life – to my new life.

That’s what I thought, anyway … In May 2016, there was an unexpected death in my family, unfortunately. Since then, quite a lot has changed. My exercise fell behind completely and my diet wasn’t exactly a priority anymore. A healthy daily routine? Wasn’t an option initially. I stopped paying attention to my lipedema. Unfortunately, I also started putting on weight again.

It was early 2018 when everything changed again. I suddenly had a strange feeling in my arms, from one moment to another. A feeling of tightness and sometimes a little tingle. At first, I thought there might be a problem with my nerves, maybe due to all the desk work. Lipedema in my arms? It didn’t even cross my mind. My nerves were all intact, however. But then I suddenly started having symptoms again on the entire back of my leg, right up to my bum. This sharp, tingling and often localised pain was all too familiar and I knew – it was back … I had new waves of lipedema that sometimes even kept me up at night. So this time, all the areas that hadn’t been operated were affected. A total setback for me! And along came the question: ‘Is that my own fault?’

How do you deal with this setback? Who is by your side? Who is helping you?

My greatest pillar of strength is my mum. Even if she can’t empathise with everything as she doesn’t suffer from lipedema herself, she still wants to do everything in her power to make me feel better. Initially, it was really difficult for me to accept this ‘new’ condition. That’s why I looked for a new way to get in touch with others who have the same problems. I found out about an entire community that had evolved on Instagram. I wanted to join it and created a new Instagram account. However, this also meant that from now on, I was going to be dealing with the lipedema subject openly and honestly. To this day, I still find that difficult. Nevertheless, I feel like I’m in good hands in this community and, most importantly, that people understand my struggles.

Do you want to have further surgery done?

Definitely! I’d almost forgotten how nasty bursts of lipedema feel and how unpredictable they are. As they almost drove me to despair, the subject of liposuction wasn’t far off. I’ve got a new consultation appointment in February 2019. As I can sometimes be quite impatient, I’d love to be put right onto the operating table. My greatest wish is to be completely ‘cured’ after this and to get rid of all the symptoms. However, it mustn’t be overlooked that such an operation is ‘only’ the beginning of the change. Body and mind go together, after all. It’s a tedious process, on all levels.

What do you wish for in terms of lipedema?

I would love for those with lipedema to not be left alone so much. A lot of lipedema sufferers are still pigeonholed – because of doctors’ ignorance, but also because of other people’s ignorance. Along with this goes an endless chain of emotional scars which even lead to the loss of your sense of femininity and your own body awareness. And those who want to undergo surgery, because it’s the only healing method, ultimately have to come up with their own ways to pay for it. An expensive new life which has to be paid for with a lot of money as well as with your own scars.

Thanks a lot for the open and honest conversation!