‘Just go for it and don’t give up!’

How exercise changed Vanessa's (lipedema) life.

32-year-old Vanessa is always on the move – be it with her racing bike, on her trampoline or with her hula hoop. Sport is a part of her life that’s almost as important as eating and sleeping. She doesn’t let the stage 2 lipedema in her arms and legs hold her back and regards herself as part of ‘team anti couch potato’. On her Instagram account @rundundsportlich, she shows how she achieves this. She is also a #LipödemMutmacher and an inspiration in terms of sport and exercising. In this interview, Vanessa shares some insights into her personal development.

When did you get your ‘stage 2 lipedema in arms and legs’ diagnosis?
On the 24th of October 2014. I was made aware of the subject through a friend and the lipedema campaign by Corinna Hansen-Krewer, so I went to a medical specialist who confirmed my suspicion.
 

What does your therapy currently look like?
I do a lot of exercise regularly and have changed my diet (WeightWatchers and mainly vegetarian/vegan). I also have manual lymphatic drainage done, use my Lympha Press and consistently wear flat-knit compression clothes.
 

What annoys you about the condition the most?
When the pain comes out of nowhere. The fat deposits around my knees and elbows.
 

How do you deal with the illness? Who is by your side? Who or what helps you with it?
My friends and family are all by my side. I’ve actually got to a really good place and have finally found the right path through exercise and an improved diet. The compression helps the most – it really reduces the pain to a minimum, so I can cope well with the pain management.
 

‘24.2kg less and four trouser sizes smaller speak for themselves!’

You lost a lot of weight and did it in an amazing manner. How did this change come about? What did you do differently?
I started exercising unexpectedly in May 2020 and since then, it has become a daily hobby and a fixed part of my life. I don’t really think about it much anymore and definitely belong to team #anticouchpotato! I also started doing Weightwatchers in October 2020 and have been dropping the pounds since. Today’s status: 24.2kg less and four trouser sizes smaller speak for themselves. As I do it all for myself, I’m not finding it difficult. I’m not following any specific goals, such as a certain clothing size or something like that. My ambition simply comes from the mindset of ‘just go for it and don’t give up!’
 

Your Instagram account says ‘no surgeries #lipedemawithoutop’. Why did you decide against having surgery?
I’ve always regarded my lipedema as a mainly visual problem that’s been annoying me. Thanks to the compression, I’m able to control the pain which has reduced the need for surgery. Operations aren’t necessarily a cure, anyway, so the lipedema could always return. I wanted to find a solution with which I’m comfortable.

The operations are a great burden for the mind – I really do want to spare myself this. As long as I can move as well as I do now, I won’t be considering going under the knife ‘only’ to improve the way I look. Besides, I do have to say that my pain threshold is very high. Also, my husband, friends and family love me the way I am. That’s a huge factor in achieving self-acceptance, of course. When using the hashtag #lipedemawithoutop, I wanted to show lipedema patients an alternative to liposuction since most of them still think that surgery is the only way, unfortunately.

‘I would love for health insurance to cover the costs of compression stockings as they are our daily weapon against lipedema and not a fashion accessory!’

A glance at your Instagram profile @rundundsportlich reveals that you put some intense effort into discussing the subject of lipedema and you also make your posts very visually appealing. Why is that? What’s the motivation behind this?
It means a lot to me to have other ladies participate a little bit in my ‘world’. Lipedema is a part of my life and I want to pass on all my knowledge about it so that they don’t feel alone. When I was diagnosed in 2014, there was no-one I could ask, so I was all alone. I’d love to spare others this feeling, so I’m always ready to provide answers and support – no matter what it’s about. And as I am a media designer, making it look nice is second nature to me.
 

What do you wish for with regard to lipedema?

• For the illness to be researched further in order to find the causes and to develop possible treatment options further (especially with regard to nutrition). Most of the information currently available is very ambiguous.
• More societal acceptance for lipedema sufferers and a bit more sensitisation among people.
• I’d love it if our health insurance covered the costs of compression stockings as they are our daily weapon against lipedema and not a fashion accessory.
• For us to receive care in general which actually meets our health demands.
• I really want the body-shaming to stop which particularly happens among stage 3 patients who direct it at stage 1 patients! We’re all in the same boat. It’s possible for a stage 1 woman to be in more pain than a stage 3 woman. It’s not about ‘I’d be glad if I had your legs’. Stop it – nobody wants any lipedema legs!
• More education about how lipedema works. Not only profit, especially for doctors who want to operate yesterday.
• I would like for misbeliefs to stop spreading – the claim that exercise and a change in diet don’t help with lipedema, for example. Sure, you can’t lose the lipedema fat. However, a healthy lifestyle has never hurt anyone.
• That every one of us can accept themselves just as they are.
• For more positivity in the lipedema world as well as mutual encouragement and celebration of successes – after all, we’re all #strongertogether.