Interview with oedema patient Mareike Zebisch

“Compression is part of my life”

wedding in black

Mareike Zebisch masters compression therapy with self-confidence, joie de vivre and unusual outfits

A wedding in black? Although it may sound unusual, for Mareike Zebisch a long-awaited dream came true in 2018 – with black compression stockings, of course. Mareike confidently takes her illness in her stride. The 28-year-old has a diagnosed lipoedema with secondary lymphoedema, also called lipo-lymphoedema. On her Instagram account www.instagram.com/weaselranger93, she talks about her life with the disease to those affected, gives tips on coping with everyday life and fashionable inspirations. Her open, honest manner motivates patients to continue lipoedema and lymphoedema therapy on a long-term basis. Ms. Zebisch, when did you notice the first signs of the disease?

Ms. Zebisch, when did you notice the first signs of the disease?

“A thrombosis developed in my left lower leg after a long-distance flight in December 2015. That was an indication for me to seriously declare war on my overweight problem. Exercises and a change of diet had hardly shown any positive effect until then. It was then I decided to participate in a programme under medical supervision. Although I did shed some pounds at only 800 calories a day, I felt a lot of pain in my legs. My nutritionist already began to suspect lipoedema and advised me to visit a vascular specialist.”

Lipo-lymphoedema

Fatty tissue increases in cases of lipoedema. Some patients may also develop lymphoedema. Experts refer to this combination of the two conditions as “lipo-lymphoedema”. If the feet and toes also swell (positive Stemmer’s sign), the damage to the lymph vessel system becomes visible. Patients are then treated as with lymphoedema therapy: skin care, manual lymph drainage, compression therapy and exercises in combination with a change in diet.

What was the diagnosis?

“I went to see my angiologist, who had already treated my thrombosis and prescribed round-knit, CCL 2 medical compression stockings. The bare facts: hardly any general weight loss, weight loss during the nutrition programme – mainly due to the loss of fluid, pain when touching arms and legs, for example after exercises. An ultrasound then showed pathologically increased fatty tissue. I could hardly believe what my angiologist told me: ‘I already suspected you had lipoedema after your first visit. The so-called “suave pants effect” that can result from the pathologically increased fatty tissue were already visible.’ I then changed doctors, because my first visit had already been a year ago and she had not taken any action in this regard. My current doctor is fortunately a lipoedema expert.”

What does your therapy consist of?

“Instead of round-knit, I now wear flat knit medical compression tights (mediven 550 leg, CCL 2) and arm sleeves with gloves (mediven mondi esprit, CCL 2). I get lymphatic drainage once or twice a week.”

 

How long do you wear your compression daily?

“I work in shifts as a medical and technical laboratory assistant at a university hospital. I wear the tights every day for about twelve to 14 hours and they really make me feel better. I prefer wearing a special compression bra for lymph drainage or at home. I wear the arm sleeves and gloves every day. Nitrile gloves are only required at work.”

You are very open about your diagnosis on Instagram. What inspired you to be that way?

“I was raised to have confidence in myself. I am also quite particular, for example, in terms of my fashion style. That’s why I am relaxed about my illness when others give me strange looks or even stare. Many users are happy to receive inspirational and motivating tips for their own lives.”

You integrated your compression garment into your outfit in a clearly visible manner at your wedding. How did your guests like the outfit?

“For me it was clear that I should show the compression garment as part of my life, including at my wedding – matching the unconventional, black wedding dress. My guests were already used to me wearing arm sleeves and stockings. Their feedback regarding my outfit on this special day was consistently positive. Only my husband initially had doubts about whether the Swarovski® crystals really suited me, but they were the perfect accessory for our ‘black wedding’.”

How does your husband deal with your illness?

“My husband supports me wherever he can and is very considerate. He often helps me put on and take off the compression garments, washes my stockings when I forget after a stressful day and is always interested in the new colours and patterns I choose.”

What improvements would you like to see for oedema patients and their relatives?

“I would like to see improved education about the disease and more self-help groups. The topics of initiative, self-management and compliance are particularly important and must be more actively promoted. There is also room for more communication between patients who wear compression garments for a variety of reasons: for example, between lipoedema or lymphoedema patients and cancer patients. The latter can also develop secondary lymphoedema due to their underlying cancer. Patients should dare to think outside the box and learn from each other! Everyone stands to benefit.”

How do you maintain such a positive attitude towards life?

“The disease is of course annoying at times – there are good and not so good days. I enjoy my life and always remind myself that there are worse fates than having to wear compression garments. We have access to very good care in Germany, which is not always the case in other countries. My doctor suspects that I may have developed a reactive depression due to the chronic disease. Although we are planning to work on that, it’s no reason to feel sorry for myself. As life can be so beautiful, I really don’t want to think about my illness all the time. I personally benefit from my medical education, as a result of which I already knew a lot about the lymphatic system. I am open to new things and at the same time grateful for what I already have. All this together gives me a lot of strength.”

What message do you have for others who may be affected?

“Get to know your illness well and take a close look at treatment options. That will help you stop fearing it and begin living in a much more self-determined and self-confident manner.”

Ms Zebish, thank you for the interview.

* Swarovski® is a registered trademark of Swarovski AG.

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