With her contributions about her chronic condition, lipoedema patient Natalie Stark encourages herself and others to stay strong
She likes to take charge of things herself: Natalie Stark, a lipoedema patient and Pinterest marketing consultant, set up the first German lipoedema podcast in 2017. She not only encourages fellow sufferers to stay strong, but also encourages herself. In interviews with experts and people affected by the condition, she talks about her experiences with the chronic condition lipoedema and shows how self management can work. Her motto is: “For a good life with lipoedema.” She has been supported by blogger Caroline Sprott since July 2019. At www.derlipoedempodcast.de, the two lipoedema patients chat about health with ease and enthusiasm. On her blog www.mindbodylife.de, Natalie provides people affected by the condition with support via mentoring opportunities or online courses. In the interview, the 35-year-old tells us about her path to a positive way of dealing with herself, her lipoedema and her therapy.
Ms Stark, you were diagnosed with lipoedema at 19 years of age. What thoughts went through your head at the time?
“I thought: ‘I don’t have that! I don’t want anything to do with that!’ For 15 years, I kept my diagnosis of lipoedema very quite. It was only through having my own podcast and through blogging that I was able to open up to others more and, above all, to myself! The podcast is like therapy for me and it’s a very successful form of therapy.”
What inspired you to start your blog and how do you decide what to write about?
“There’s still too little research into the causes of lipoedema. I’d like to collect as much knowledge and as many experiences from experts and people affected by the condition as possible in order to better understand disease patterns and causes. With regard to the content, articles, posts or encounters, both online and offline, inspire me. I hope that users gain some strength from listening to my podcast episodes. Lipoedema can turn your world and emotions upside down and decrease your self-esteem. My major goal is to provide those affected by the condition with support in making their lives easier again and finding themselves. The emails I get from my listeners confirm that I am doing the right thing. They talk about how much the podcast helps them, gives them hope or helps them develop a positive approach.”
What criteria do you use to select your interview partners?
“They need to fit in with the motto of my blog. For example, people affected by the condition talk about how they do modelling work with lipoedema, wear stylish clothes, teach aqua aerobics, run marathons, lose weight or integrate compression into their everyday lives. I like talking to experts about research into the causes, about liposuction, diet, lymph drainage or different compression options. Alternative treatment methods, such as Ayurveda, are very close to my heart. I particularly like the podcast episodes in which we talk about relaxation and stress reduction or even meditate.”
Have the many experiences and views which your interview partners share with you changed you and your perspective on things?
“Definitely! I have gained a lot of clarity and self-confidence. My podcast has the subtitle ‘for a good life with lipoedema’. However, I did not start it because I thought life with lipoedema was good but, rather, to get to that point. I’d like to feel complete and valuable with my condition. Nowadays, I do feel complete and valuable very often. This is because targeted stress reduction and relaxation lead to inner balance, which has reduced my pain.”
Is there an interview that has really stuck in your mind?
“The interview with Waltraud Scheller from www.soultracks.de changed everything for me. Our stories of our illness are similar. She had been trying an unbelievable number of things for 14 years and then she stumbled across Ayurveda. This gave her so much strength that she now considers herself to be healed. Six weeks after the interview, I attended a two-week Ayurveda retreat in Sri Lanka and, for the first time, my calf circumference was reduced significantly. The retreat was so good for me that, at the end of 2019, I moved into an Ayurveda house on the same island for three months. Back in Germany, I completed training as an Ayurveda nutritionist straight away to delve into this topic even more deeply and to be able to personally provide other women affected by this condition with help.”
What do you consider to be the central aspect of the Ayurveda retreat?
“In a true Ayurveda retreat, rest and relaxation play a key role. There are five to seven applications per day. The Ayurvedic Shirodhara with healing herbs, for example, has a calming and harmonising effect and helps to bring clarity to your thoughts. In addition, you eat three meals a day very slowly and mindfully. Each meal lasts around 45 to 60 minutes and is made up of several courses.”
Have your Ayurveda experiences also changed your diet in your day-to-day life?
“As a general rule, I now eat three hot meals a day and rarely eat cold meals. For breakfast, for example, I eat porridge with warm fruit and for lunch I generally cook rice, buckwheat, millet or quinoa with fresh vegetables. Sometimes I also eat chicken or white fish. I’d like to just eat soup in the evenings, but I don’t always manage that. Overall, I live according to the 80-20 rule: 80% of the food I eat fits in with Ayurveda and the other 20% is more flexible. For me, this means less obligation and more freedom than with a conventional diet. As well as nutrition, Ayurveda is about a holistic lifestyle and more balance.”
Do you consider movement to be an important part of therapy?
“Absolutely! I work on the computer a lot and I can really feel that my legs want to move. I exercise on my trampoline several times a week and do yoga once or twice a week. I also like going swimming early in the morning in summer. Since I don’t have a car, I often walk or cycle when I need to get somewhere.”
Flat knit medical compression stockings are part of your therapy. What is particularly important to you in this regard?
“I use both stockings and cycling shorts. The compression items need to be comfortable. They can’t be too tight on the stomach or at the hollow of the knee, nor can they cut in where the leg meets the foot.”
What are your wishes for oedema therapy?
“We need to teach people affected by the condition to activate their lymphatic system on their own and independently in terms of time, place and other people: I’d like courses on lymph and vein exercises, lymph yoga, Ayurveda and nutrition. In order to, for example, support lymph drainage as effectively as possible yourself, special hand movements and tips can be covered either online or offline. I have now put together a programme in which I use my own hands a lot and this has made me more independent. Information about this should be provided by the doctor straight away once the diagnosis has been made. I consider this to be an excellent opportunity with regard to self management.”
What opportunities do digital tools, such as podcasts and apps, provide for oedema patients?
“People affected by the condition can use these tools to talk to others in the same position and create a network in a simple and location-independent way. The digital tools provide helpful information which has been pooled in one place and can be accessed at any time whilst you are on the go, which makes people more flexible and independent.”
What do you think about the medi companion app for lipoedema and lymphoedema patients?
“The app has been designed with great care. For people who have been recently diagnosed with the condition in particular, it’s a valuable tool and provides them with support in learning about the world of lipoedema more easily. In particular, I like the holistic approach, which also includes topics like yoga or relaxation techniques.”
What personal message do you have for other oedema patients?
“The body is the best guide for achieving healthy, happy and balanced life. Don’t think that you are worth less because of the lipoedema or lymphoedema and don’t let it restrict you. If lipoedema has taken over your life, make sure you become the author of your own story again but don’t forget that change takes time! Give yourself that time. You’re worth it!”