My personal journey with Lipoedema
My lipoedema story starts over 20 years before I ever even heard of lipoedema. As a not-quite teenager starting to go through puberty, it was soon very apparent that my body was different from other girls my age. My legs were a different shape, thicker, and a different texture to others. I had dimples on my legs and buttocks from the age of twelve! The PE change room soon became a traumatic experience and I started avoiding those shared undressing spaces to hide the fact that my body looked different.
My relationship with my body by my teens was not a positive one, and having undiagnosed Lipoedema changed the way I dressed and the activities I chose to do. I covered up my legs most of the time, wearing jeans throughout the summer and long pants to school as much as possible. I stopped playing sports and dancing as my body changed as I felt I stuck out like a sore thumb. Whilst I probably seemed outgoing, with a love of music and performing, I struggled with self-doubt and low confidence. I was in a constant battle against my body, obsessing over diets and weight loss, and exercise became something I did to try to make my body smaller, not for enjoyment.
This continued into my twenties, and despite experiencing success at university, in my career, and finding a loving partner who accepted me as I am, I never felt comfortable in my body. Everything would be better if I could just make it smaller and look like “everyone else.” I experienced some short-term success with constant dieting and for a while I felt like I might be winning the battle against my body to conform. But the side-effects of food restriction were severe nutrient deficiencies, digestive issues, terrible skin, and low mood. It really seemed that I would have to choose between being slim(er) and being happy. I then decided that what I needed to do was focus more on exercise, so I joined a gym and became a regular attendee at almost daily classes for the next two years. Up to 8 hours a week I would be at the gym, doing cardio and working to build strength and waiting for my body to change. And it did change, it got bigger yet again.
By the time I was pregnant with my first child I was considered obese. Despite my best efforts to stay active and healthy throughout my pregnancy, I started retaining fluid severely (without any other signs of pre-eclampsia) and gained 22kg in the last few weeks before delivery, which put restrictions on how I could deliver my baby. No one had any idea what was causing the fluid retention, and I was made to feel that, yet again, this was my fault for over-eating and not being healthy. Nothing I did (and I did a lot) could move the fluid, and by the time I went into labour my legs were swollen to mid-thigh and I very uncomfortable and more concerned with that than giving birth. This was my first sign that something wasn’t quite right with my lymphatic system.
By two weeks post-partum I had lost all that 22kg (an estimated 14kg of fluid, once you take away the baby, amniotic fluid, and placenta) and more. I returned to my normal activity quickly and soon spent hours each day walking an unsettled baby (his story will have to wait for another blog!) around my neighbourhood in between breastfeeding almost two hourly for months. Despite all that, there was no breastfeeding weight loss for me, instead this was a period of rapid lipoedema progression, mainly in my arms and stomach. It became harder to find clothes to fit and I started sewing my own clothing so I could make the fit adjustments I needed.
A couple of years after my second child I noticed the next change: pain. I had always been very active and lived close to our town so would sometimes be out walking with the pram for most of the day. But I started to notice that I couldn’t walk all day like I used to. My legs became swollen and heavy by the afternoon and by the evening I was in pain and struggling to stand to cook dinner. I had to start prioritising which errands I needed to do each day for the short window I could tolerate walking around. The fatigue and inflammation were unbearable, but I didn’t bother going to the doctor. I knew what they would say: I needed to lose weight. Despite a lifetime of trying to lose weight with no success, and no one able to tell me how to successfully lose weight, losing weight was still the main recommendation at every medical visit.
Then one day in 2018 I was scrolling on a Facebook group for plus-size sewing, and I saw a lady post a recommendation for a pattern that was a great fit for her “Lipoedema legs”. Her legs looked exactly like mine. I had never heard this term “Lipoedema” before, but I quickly hopped down the rabbit hole of research and information and found most of it was in Facebook support groups filled with those just like me, suffering from a lifetime of looking different, being told they weren’t eating or exercising right and being blamed for their large, swollen legs that were starting to impede on their mobility.
By this point in my life I had embarked on a second degree, a Bachelor of Health Science in Naturopathy, as I wanted to be able to support and improve the quality of life of children and families struggling with food and chemical intolerances, restrictive eating, neurodivergent presentations etc, all the things that my children and I had been through. I still had serious doubts that I would ever actually be able to practice or be taken seriously as a naturopath due to my size and appearance, but I was enjoying learning about how the body worked regardless. I started to take my learnings and the information shared by others with Lipoedema to experiment on myself. When I finally summoned the courage, it only took two visits to the GP ( way below the average number before diagnosis) to find someone who would confirm my clinical diagnosis of Lipoedema, but there was little in the way of suggestions for support or management. I found my own support, a beautiful Vodder-trained myotherapist who taught me so much about Lipoedema conservative management, and my own naturopath who helped me find some supplements to start with, and I began my own research and trials on changes in diet and supplements to reduce inflammation and swelling in Lipoedema.
Despite the stressors of the pandemic, months in Melbourne lockdowns, finishing a university degree, working, and parenting, somewhere along the way I started to experience positive changes. My legs weren’t swelling as much, I wasn’t in pain every day. I didn’t need to use my vibration plate as often; I was ok to go without compression more often. I could tolerate longer walks, I could even go on holidays (when we weren’t in lockdown) and walk for most of the day. We decided to get a dog, as changes to work arrangements in a post-pandemic world meant we were home more often, and I could walk the dog most days of the week, and still cook dinner afterwards. Without me even realising it, pain became a rarity rather than a regular experience.
At the same time as this physical work and improvement, there was much emotional work going on too. Fat-shaming is a regular occurrence in the life of a person with Lipoedema. I have been told by multiple doctors that I just need to lose weight, even when attending for an unrelated health issue. I’ve been offered bariatric surgery when asking for a referral for Lipoedema surgery and had to explain why they weren’t the same and wouldn’t have the same result. I’ve had nurses tell me about their success with their latest diet program and suggest I try it when I was hospitalised with tachycardia and palpitations (related to an experiment with intermittent fasting which mucked up my cortisol and electrolytes!). My kids have come home in tears because other kids have teased them that their mum is fat. I’ve even had the register attendant at Aldi helpfully tell me that “you know they sell sugar-free chocolate at Coles?” when I was buying Halloween treats for trick-or treating! You can understand why many people in larger bodies hide away to avoid interactions like these.
I’ve had to make many changes to my view of myself and the world. I have curated a more positive social media experience for myself, following plus-size influencers and those with Lipoedema so I could see beauty in these other people, and start to see beauty in myself. I would unfollow accounts or people who made me feel negative about my body. I even started to share some photos of myself on sewing pages as I figured if I was out there looking for body-positive role models that looked like me, then there were others too. Slowly, slowly, I rebuilt my confidence and self-esteem. There was a lot of inner-work and a lot of ‘faking it until I made it” and still plenty of moments of insecurity, but changes happened. Having a young daughter made this work especially important, as I didn’t want to pass down body insecurities and diet-culture body shaming to her. I didn’t want to be the mother who was never in the picture, never at the beach or swimming pool, hiding in the background on family holidays and obsessing over my appearance. I am so much more than my appearance.
If the me-of-five-years-ago could see me today, I don’t think she would recognise me. Well, she would because I still look the same! I haven’t had surgery, I may one day but not yet. I still have Lipoedema. But I’m not the same person. I no longer hide out of sight, I’m no longer ashamed of my body and all it has gone through. I am working in my dream job as a naturopath, I attend events and put myself out there to meet new people. I swim with my family, and we love to go to our local hot springs. I allow myself to eat out in public, a whole meal, not just a salad (though I do love a good salad) without shame or fear of judgment. I no longer even think about having Lipoedema every day, I have found a way of eating, supplements and conservative management that is manageable and affordable for me, and days of pain and swelling are now very rare.
I’m sharing this story as I wish I could have read it five years ago to know that there was hope, and that that painful, inflamed and miserable life wasn’t my future. If you are new to the realisation that you have Lipoedema, or not new but haven’t yet found your way, there is hope. There are increasing numbers health professionals who understand Lipoedema out there, and so much great work is being done by Lipoedema Australia to bring understanding and support to this condition. Regardless of your age or level of progression, it is never too late to make a start and build a support team around you to improve your quality of life with this condition.
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