June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.
Have you ever put in a lot of work at the gym, but your body doesn’t reflect it? Can you gain 5-10 pounds overnight? Have you felt like you’ve tried everything, and the weight isn’t budging? Or maybe you lost some weight but hit a plateau that won’t budge? How about painful heavy legs and easy bruising? If you answered YES to any of these questions, you could have Lipedema. In this blog post, I want to share my personal journey with Lipedema to help raise awareness about this often-misdiagnosed condition.
When I reached out to personal trainers, doctors, and nutritionists/dieticians about my struggles, they would always blame my diet or lack of effort. Despite my meticulous food measurement, food logs, and rigorous workout routine of 6-14 hours per week, the weight wouldn’t budge. I tried various exercise programs and classes, from Bootcamps to yoga, and even trained for triathlons and century rides. I was constantly striving to incorporate more physical activity into my daily life, but the results were frustratingly elusive.
I was bombarded with advice, all centered around my diet and exercise. I heard everything from “calories in, calories out” to “eat low fat” and “eat more lean protein.” I was told to try organic, whole foods plant-based diets, juice cleanses, and eliminate gluten, dairy, and red meat. The suggestions were endless, contradictory, and overwhelming. I followed every recommendation, hoping for a breakthrough. However, nothing seemed to work, and I felt defeated.
Imagine hearing all these suggestions and attempting every single one without success. The disappointment and frustration can be overwhelming. It’s disheartening to witness others achieving fitness goals with seemingly less effort while pushing yourself to the point of tears, injury, and exhaustion. To make matters worse, the physical fatigue and pain sometimes prevented me from making it to the gym, leaving me burdened with guilt. Unless you’ve experienced chronic fatigue and pain, it’s difficult to understand the toll it takes on both the body and mind.
Some of the hurtful comments from friends: “Isn’t it weird to be with someone so much more fit than you?” One boyfriend said to me, “I will never have a baby with you, because you will blow up like a pumpkin and never lose the weight.”
Throughout my life, none of the doctors, trainers, or nutritionists ever mentioned Lipedema to me. I was always made to feel responsible for my struggles. This lack of awareness and understanding perpetuated feelings of low self-esteem and inadequacy. Hurtful comments from friends further fueled these negative emotions. It wasn’t until later that I learned about Lipedema and the conservative therapies that could have helped if only I had known.
What is Lipedema?
Lipedema or Lipoedema (UK) is a loose connective tissue disorder that often manifests during hormonal events like puberty, pregnancy, and menopause. Shockingly, 1 in 9 women have Lipedema, yet many remain undiagnosed. This condition causes the body to accumulate fibrotic fat that cannot be burned through diet or exercise. As the fat continues to grow, it becomes painful, adds weight, alters the gait, and can eventually lead to mobility issues and the need for knee replacements. However, early detection and management can slow down its progression.
Lipedema not only affects the body but also takes a toll on our mindset. When we put in the effort at the gym and maintain a healthy diet, but the weight refuses to budge, it’s natural to question our self-worth. These feelings can permeate other aspects of our lives, impacting our overall well-being. It is crucial to understand the physical and emotional challenges faced by individuals with Lipedema.
What does Stage 1 Lipedema look like? This was my leg in 2011 – the peak of my fitness, before the Lipedema spread into my upper body.
By sharing my personal journey with Lipedema, I hope to raise awareness about this condition and shed light on the struggles faced by those affected. In the upcoming Part 2 of this blog post series, I will delve into my childhood with very early symptoms. Stay tuned for more insights on this journey of understanding and coping with Lipedema. I’ll be sharing how this disease progressed and became painful, even with a healthy diet and exercise.