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Unseen Struggles of Primary Lymphedema

Celebrating Little Victories & Navigating Everyday Hurdles


A recent day marked a remarkable milestone for Jo. She decided to wear jeans after over a year of sticking to shorts and skirts. We have struggled to find jeans that would fit her waist, length, and accommodate her swollen leg. As a last ditch effort, I purchased a cheap bootcut brand with little expectations of them working. The following morning, Jo was eager to try on the pants. It was western dress up day at school and she desperately wanted to be a part of it. To our surprise, those cheap jeans fit like a glove in all the right places! The joy on her face was a beautiful sight.

But, as with many things in life, our celebrations can sometimes be followed by setbacks. By the time Jo came home from school that day, her joy had turned into discomfort. The culprit? Her compression stockings. These stockings are essential in managing her lymphedema, but they bring a set of physical challenges unlike anything most people encounter; for example, using the restroom. What used to be an independent task is now marked with assistance from adults.



Compression garments are like a second skin, but they are snug and unforgiving. Each morning, Jo faces the daily battle of putting them on. It's not just about slipping them on like regular socks; it's a struggle against resistance. The garments compress her limbs and pelvis to reduce swelling, a necessary step for her well-being, but it demands tremendous effort. What used to be a quick task now becomes a time-consuming process. Jo must summon patience and perseverance to wrestle with these garments, akin to squeezing into clothes that are a size too small every single day.


Add jeans on top of that, and what seemed like a moment of rejoicing would soon lead to discomfort and difficulty. She struggled through the school day, and as she described her "miserable" day, she expressed her excitement to have a pair of jeans that fit properly, but she also vowed to never wear jeans again.


It's moments like these that remind us of the daily hurdles children with lymphedema face. It's the unseen struggle that often goes unnoticed. Yet, we strive to ensure that our children are not defined by their disease or use it as an excuse. We encourage them to dream big, chase their passions, and embrace life with open arms. But it's not always easy.


The truth is, there are days when staying positive can be a challenge. The daily struggles can be disheartening, and it's okay to acknowledge that. It's normal to feel frustrated, but we always remind ourselves that these challenges don't define our children--they are part of their unique journey.

It's crucial to focus on the incredible resilience and determination our children display every day. They inspire us to keep pushing forward, to keep advocating, and to never give up. We learn from them that even in the face of obstacles, life is full of beautiful moments.


So, as we navigate the daily challenges of primary lymphedema, we're reminded that our children are not defined by their disease, but rather by their courage, their determination, and the love and support that surround them.


The struggles are real, but so are the victories, no matter how small. In our journey, we learn that even amidst the hurdles, there's always room for celebration.

With love and strength,

Jamie

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