“Yes, Lipoedema feels debilitating and painful, where giving up almost feels easier than pushing through, but you will get through it because you are more than the condition.”
How would your friends and family describe you?
My friends and family would describe me as “sparkly”. They would say that I am like an energizer bunny that enjoys having a good time and packs a million things into her days. They would say I thrive in chaos and am drawn to fixing problems. I am calm under pressure and love order and structure as much as I value spontaneity in my life. They would see me as a committed, ambitious, professional, a loyal friend, loving wife and parent. They would also mention that I love all things sequins, love the colour gold, can’t get enough of RnB music to which I can dance till I drop!
How did you first learn about Lipoedema?
I only learnt about Lipoedema after being diagnosed a few years ago. Until then, I was under the impression that I had an extreme case of cellulite and uncontrollable fat deposits on my legs. My gut always told me there was more to it, that my legs looked different to someone that had just gained weight, but the lack of awareness meant I persisted to diet and exercise as a way to lose weight and make my legs look less bulky and more “normal”.
What words of support or hope can you share with women living with Lipoedema?
I would encourage anyone going through life with Lipoedema to remember how resilient you are. Yes, Lipoedema feels debilitating and painful, where giving up almost feels easier than pushing through, but you will get through it because you are more than the condition. You are so much more! Learn about Lipoedema, seek medical support and connect to communities such as these that have empathy and understanding of what you are going through. Above all else, do what feels possible to take back control from a mental, physical and support perspective… sometimes the despair can snowball and give us a sense of helplessness. Taking back control in whatever little way you can, will give you the confidence to bring back normality into your life one step at a time. You’ve got this!
What’s something that people often don’t know about Lipoedema?
People often associate Lipoedema with being overweight or obese. It’s not simply a matter of ‘eat less, exercise more’ to manage Lipoedema. It is a condition that affects women of all ages, sizes, demographics. I wish more people knew what Lipoedema is and what causes it so that they would be more empathetic with their own bodies and those of any loved ones experiencing this condition.
Why do you think it’s important to advocate for awareness of Lipoedema?
On the most simple level, I advocate for Lipoedema because I wish I knew of it before my diagnosis. The years I spent subjecting myself to fad diets, spot treatments, rigorous exercises etc to try and “lose the weight” when all along it was a condition that silently existed under the guise of what I thought was “abnormal fat pockets” “extreme cellulite”. I remember feeling despondent that my legs didn’t look like anyone else’s legs I saw online or in the media… or even in my family. If I was aware that Lipoedema existed, I may have sought a medical opinion much much sooner. Having my diagnosis was like a weight was lifted off my shoulder. It gave me the validation that I wasn’t broken or faulty and that there was hope to live normally while respecting and working around the limitations of my condition. I felt so relieved not having to be at war with my body but instead learning acceptance and eventually love. Lipoedema education and awareness is so important as it can affect women in all walks of life. Early diagnosis and management can make a huge difference by working “with” the condition rather than “against” it. Lipoedema awareness is important so that women can trust their gut and champion for a proper diagnosis themselves. Women are already dealing with so much stigma on so many levels, hopefully by spreading awareness of Lipoedema I can play my part in removing the shame and embarrassment that is often associated with this condition. Awareness, attention and action can help minimise discomfort and maximise quality of life through this journey. It took me years to go through this steep learning curve due to lack of awareness. I am hoping that the part I play in Lipoedema awareness will speed up the process of discomfort to diagnosis for someone else like me!
What do you hope to achieve on your Lipoedema journey from here?
I hope that over time I can truly love my body for what it is, and how it looks at every stage of my journey. Education about the condition, connecting with like minded “lippy ladies” and learning to work alongside Lipoedema in my daily life has been truly empowering for me. I refuse to let the condition dictate what I can and cannot do, so I nourish my body sensibly, prioritising some form of enjoyable movement and stay in a “solution focused” mindset surrounded by people who love me for exactly who I am (lumps and bumps included). While surgery seems inevitable for me in the near future, I’m doing my best to stay comfortable and confident in the meantime.
