Something that struck me as I was preparing for this interview is that there is no definitive lipoedema experience and “life with this condition is as varied as the people who live with it” making every person’s story worth telling. Today, I’m sharing Yvonne’s deeply personal account of her experience with lipoedema. From Germany, Yvonne is currently based in Gaborone, and in this blog, she shares how she spent 25 years not understanding what was going on with her body, dealing with misconceptions, misdiagnoses, as well as physical and mental health battles. A diagnosis finally gave her the chance to arm herself with knowledge, make some adjustments and reclaim her power against this misunderstood disease. When I asked her what inspired her to tell her story, she said in part, “to help affected women accept that lipoedema is a disease, but it does not have to mean the end of life.” So, I’m delighted to give her this platform to do so.

When I noticed one of your hashtags on Instagram, #runningwithlipoedema, I must admit I was completely ignorant of this condition. So, let’s start there – what is lipoedema? Well, I wouldn´t say “ignorant”. The disease itself is not very well known. Lipoedema (or Lipedema) is a chronic disease that occurs mostly in females. It is a condition that causes excess fat to accumulate in the lower part of the body, most often in the buttocks, thighs and calves. The upper arms can be affected as well. Most patients have a normal looking upper body and a not matching lower part of the body with protruding buttocks, massive thighs, bulky calves and small ankles. On the subject of it not being well known, there are some women in my family who didn’t know it for a long time. For example, it was not until 2017 that my aunt was diagnosed, after she had tried everything for years and visited countless doctors.

What are some of the common signs and symptoms? Thighs, legs and arms are sensitive to touch. Legs bruise easily. When climbing stairs, the legs are heavy and full of pain. The legs hurt at night. Standing for a long period makes the legs swollen. A lipoedema patient is often tired and limps in the evening. A major issue is that attempts to lose weight through dietary changes and sport have little or no positive effect on the affected areas. A balanced diet and regular exercise do not prevent you from gaining weight. Complaints begin or increase during puberty, after pregnancy or during menopause. After being in cold conditions, the legs do not warm up quickly. That´s probably the only symptom which won´t occur here in Botswana! 😉

You’ve said it took years for your aunt to be diagnosed and I’ve read that even though lipoedema affects as much as 11% of the women population, getting a diagnosis from a doctor is not easy. What was your journey to getting a diagnosis? Since my childhood, I have always been active in sports. At the beginning of my school years, I did gymnastics and joined the swimming team. Later on, I played football. I grew up in the countryside and as both my parents worked, I used my bike a lot to see friends after school or to attend training.

I think I was 15 or 16 years old when I realized something was wrong. Even with training three times a week plus a football game on the weekend, I was steadily gaining weight. After an injury, I had to give up playing football and I went to see my doctor. He himself, a bit more corpulent, only said that I had to find another sport and go on a diet, and I will lose weight for sure. This was the beginning of my diet nightmare which was to last 25 years. Searching and looking for the newest diet, always looking for the ne plus ultra that could help me. But the weight still increased. My highest weight was 135kg with a height of 1.64m. Shocking!

“So, over the years, I built a wall around me and told anyone who wanted to hear that I was comfortable and didn’t mind the weight.”

I finally got the diagnosis in January 2018. My aunt informed me about her diagnosis, so I made an appointment with a clinic in Berlin, Germany, where I received the answer, I had been seeking for 25 years. I was relieved to finally have a name for the suffering. Then came the state of shock that I am now faced with the problem alone. And all the questions – What does this diagnosis mean to me? Can I go on with my life as before? I move every three or four years for work, live in different countries with different climatic conditions. Sometimes with a good supply of food, sometimes with a not-so-good supply. How do I start living with this disease? I was supposed to work in Miami/Florida from August 2018 onwards. How can I handle this? Can I create a routine within the next six months, which allows me to live a so-called normal life?

So, you get an answer, but even more questions… How would you summarise your challenges of living with lipoedema? Hmm, how can I put it best: because of my professional career, I lead a relatively unstable life. I only stay in one place for a few years and then move on. This makes it difficult for me, for example, to join an advisory group that is increasingly being set up in Germany. The best way to learn is through exchanges and experiences of those also affected. With all my movement, I have to establish over and over again what is possible and what is not. If you stay in one place, you have your comfort zone – you know where to go for groceries, how the body reacts in winter, spring, summer, autumn, where to get the right compression, etc.

“Secondly, the acceptance of this disease in society is not so present. Often, only the fat woman is seen, who should eat less.”

To your last point, what would you say is the biggest misconception of lipoedema? Probably that lipoedema is caused by obesity, laziness and underactivity. The most-said sentence that every lipoedema patient has heard, is probably: “If you exercise more and pay attention to your diet, you will lose weight.” But we are talking here about the dysfunction of fat deposition in the body, which is triggered by hormonal events in a woman´s life. A disease that is not obvious is less accepted. Chronic pain cannot always be seen. This is more of a silent illness, which, depending on the degree, can even lead to incapacity to work.

And what role, if any, does lipoedema play on your mental health? Since my visit to the doctor as a teenager, the topic of food has occupied me. It is present 24 hours a day. There are days when I am scared to eat in front of others because I’m afraid of being judged. I get totally stressed when I have to buy groceries because I feel like everyone is staring into my shopping cart. On other days, I just don’t want to eat anymore, because the mere thought of eating depresses me mentally. Plus, I’m an emotional stress eater. So, in particularly stressful situations, I resort to eating, while normally healthy people tend to lose their appetite. So, if I go shopping, which is stressing me per se, it can happen that I buy unhealthy foods that are actually not good for me at all. As they say, a vicious circle that’s hard to break out of.

That’s so tough – dealing with both physical and mental challenges in an environment where people understand so little and make harsh judgments. What is the treatment for lipoedema? Well, the so-called conservative treatments are:

• Wearing compression.
• Manual Lymph Drainage (MLD) which is a gentle, massage-like treatment that promotes the removal of lymph fluid from the swollen limbs.
• Dry brush ensures better blood circulation to the skin. It promotes blood circulation, regulates blood pressure, stimulates circulation, stimulates skin metabolism, regenerates it, hardens and stimulates. Also, the lymphatic system is stimulated.
• Exercise like walking, aquatic exercise, Pilates, cycling and yoga.
• Eating less inflammatory food – but here every woman has to listen to her body because everybody reacts differently.

“Once the diagnosis has been made, it has to be clear that from now on you have to pay much more attention to yourself and listen to your body”.

And is there a cure? There is no cure in general. By taking care of the nutrition, exercising, wearing compressions, the symptoms can be improved. The removal of the diseased fat cells can only be done by liposuction. And here, I’m not talking about cosmetic liposuction. This is a medically necessary operation that can enable many women to live without pain. But even after, the wearing of compression is still required. Also, having medical liposuction doesn’t mean that the disease is gone forever. One hormonal attack or hormonal stresses such as pregnancy or the onset of menopause can cause a new outbreak.

Recognition of this disease is so important and health insurance companies also need to see that an operation can provide relief. The percentage of liposuction approved and paid for by the health system is low. Many women cannot afford such an operation, as several operations are often required. And as I said earlier, it is not easy to treat, and the only long-term solution is surgical intervention, which isn´t always viable for every patient.

Is liposuction something you have tried? I haven’t had liposuction done yet. For the past five years, I’ve been trying to get by without it. But with increasing pain and the consequent loss of quality of life (in my case, the fun of running continues to decrease), I went to a specialist in November 2022 for advice. I will have my first of three planned surgeries in the fall of 2023.

I’m happy this is an option that could provide more pain relief. In terms of nutrition, what have you had to do differently? This has always been a challenge for me, and I am still looking for the best-balanced nutrition. Because of my diet history, my metabolism doesn´t work properly. But I have found that certain foods are not good for me physically. So, I do not use gluten and lactose as much as is possible, because if I consume too much, the pain in the legs becomes worse. I try to avoid sugar, which can be hard sometimes as I love ice cream. But I will start to make my own. In this heat, an ice cream is soooo good and welcome! Also, I don´t drink any alcohol.

In order to regain a normal relationship with food, I am now working with a nutritionist who is also diagnosed with this disease. Having someone by my side who knows the mental and physical challenges that this disease can cause is an absolute stroke of luck. We just started and I hope this will give back some quality of life. Together with her, I am working on a balanced diet. Starting with more structure like writing a dinner plan for the week as well as a nutrition diary and trying to eat around 1800 kcal. Without abdication and prohibition of something!

Having a structured weekly eating plan should help to reduce the stress. So, over weekends, I look through recipes to see what I can cook during the week. The plan is from Monday to Friday. Afterwards, I do the groceries so that I have everything at home for the upcoming week and mustn´t think about lunch or dinner every day.

You mentioned earlier that exercise is important as part of treatment, and I know running is a big part of your life! So, let’s talk a bit about that – when and how did you get into running? When I reached one of my highest weights around 125kg, I decided once again something had to change. It was 2013 and I wanted my life back. As I mentioned, I have always been active in sports, even as “overweight”. At this time, my husband and I were living in Jordan. I went to a gym and started working with a personal trainer almost five times a week. Over the next two years, I lost almost 40 kilos and a few dress sizes.

In January 2015, colleagues had the idea to participate in a 10 km run as part of the Dead Sea Marathon and they asked me if I wanted to participate. And so, I finished my first official race in April 2015 and a great love story began. I have now finished three marathons, dozens of half marathons, and several 10k and 5k races. But even after reducing my weight my proportions weren’t right and my legs were still thick. Ambitious runners are always looking at me in an insulting manner when I am at the start line. When I joined a running group for my first marathon training, a trainer said: “Writing a marathon plan for a runner who will need more than 5 hours is not worthwhile.” I finished it in 5:09:34 and I was, and still am, proud of running 42,195 km. Who cares about timing? I am not earning money with running.

“It is simple: besides my husband, running is my second big love.”

Sadly, those running snobs will always be there. Are there any special precautions you have to take when running with lipoedema? It is important for me to have good compression. Therefore, I make sure to wear compression running tights. And, especially for longer distances, I also wear compression stockings. I also use barrier cream such as Vaseline for the sensitive areas of the body. Because of the disease, I have a weaker connective tissue and have to make sure that the skin does not rub too much, especially underneath the breasts, on the thighs in the area of the transition to the buttocks and on the inner sides. Otherwise, this can be very painful after running 42,195 km. After long runs I take a cold icy bath, which is, by the way, good for regeneration for every runner, and every night I use a massage gun for my legs.

What are some of the most memorable races you’ve done? Well, the Berlin Marathon in 2016 will always be special to me as it was my first marathon. The crowd was amazing, and it was my home race as I lived in Berlin at the time. New York Marathon in 2021 was a once in a lifetime experience, right from the Expo to the Finish Line, the race was spectacular. And walking through New York City on Medal Monday with the medal around the neck was unbelievable. So many people congratulating you – I have never experienced this in another city. And there are so many more races which are special to me because of the landscape and the people I met.

What are you currently training for? The TCS London Marathon in April 2023. After finishing New York, I figured that I could try to get the Six-Star-Medal of the Abbott World Marathon Majors. This Six Star Medal was introduced to honour the runners who complete all six Major marathons, which are Tokyo, Boston, Berlin, Chicago, New York and London. So, after finishing Berlin and New York, London will be No. 3, which would make it halfway done!

You’ve got quite the running resume! You mentioned other forms of exercise which are recommended for people with lipoedema. Which ones (or others) do you do? Core-Training with my own bodyweight, Swimming, Aqua-fitness, Jumping (Bellicon) – this is good for the lymph flow, Hula Hoop, and long-distance walking up to 50km.

How would you say exercise has improved your symptoms? I have permanent pain in my legs. Even wearing jeans is painful. But by doing sports, I can reduce the pain. The movement helps me to deal better with it. But for me, the most important thing is, it gives me the feeling of controlling my body and not being controlled by the disease.

“Working out for me is like telling my body every damn day: you can try whatever you want, but you can’t beat me!”

Having recently moved to Gaborone from Miami, what have you enjoyed about running here? I love the drier air in Gaborone and the cooler temperatures in winter. In Miami, it was often above 25C in the morning with a humidity between 80-90%. But during the week, I am now running on the treadmill after I finish work. So, it´s definitely too hot to run outside! My morning runs I do on the weekend. I like seeing so many active people on a Saturday morning.

And what do you miss about running in Miami?  First of all, I miss my running friend Vicky, whom I met during half marathon training in 2018. Since training, we ran together every Saturday until my departure in August 2022. I have done a lot of great races with her over the past four years. But we plan to run the Salt Pans Ultra (here in Botswana) together in 2024.

And I miss the ocean. As a child of the coast, water is an important element for me. In Miami, I liked to run by the sea. When you hear the sound of the waves, you don’t need headphones and music. But maybe I can run around the Gaborone Dam? Would be a small consolation, but at least water. 🙂

Haha! A small consolation, perhaps! And as we conclude, what do you want to say to someone who thinks they may have lipoedema or who has recently been diagnosed? If you think you have lipoedema, make an appointment with a phlebologist and get a thorough examination. Only after receiving the diagnosis, you can begin to change your life permanently. You need to find a medical centre to get the compression stockings that are right for you. Buying something on suspicion usually doesn’t help. But regardless of whether you have already been diagnosed or suspect that you suffer from lipoedema, I want to tell you this:

“The disease is not controlling your life. You are the one who has control. Don´t fight the lipoedema, try to accept and live with it. There is a community outside where you´ll find help. If we support each other, things are much easier to bear.”

Thank you, Yvonne, for this powerful interview – you have been incredibly honest, vulnerable and deeply personal in sharing the facts about this disease as well as your challenges and feelings. I hope this blog reaches people who have struggled in silence and confusion.

Yvonne hasn’t heard of any support groups here in Botswana but thinks it would be a wonderful idea to set up such a group for affected women. If you already know of any such group here, please do reach out with more information so we can share it on this platform. If you’d like to connect with Yvonne, her IG handle is: lipie_queen_yvonne.

I’m joining Kooky Runner and Zenaida on their link up, Tuesday Topics. Be sure to check out their blogs.