Happy Lymphedema Day, everybody!
In 2016, March 6th was further cemented to the cause as the Lymphatic Education & Research Network’s World Lymphedema Day was launched along with its accompanying petition for lymphatic diseases to be recognized as a global health challenge initiative by the World Health Organization.
So much has changed in the twenty-five years since the first Lymphedema Awareness Day, and yet we still have so far to go.
Something I love to say here on the blog is that we are our own best advocates. As patients living with an often-ignored and misunderstood condition, we’re in a unique position to tell our story to the world in our own words: we’ve got a blank page to fill with our experiences of what it’s like to live with lymphedema; our need for more timely diagnoses and access to effective treatments; our demand for more research; our hopes for a cure.
This our day, yes. But it is always our time.
What does advocacy look like?
Better awareness doesn’t just happen, though: we need to advocate for it. But what does advocacy look like, really?
Advocacy looks like a ballerina-turned-lobbyist leading the fight for better insurance coverage. It looks like an elementary-schooler with a penchant for purple and public speaking, and an octogenarian who hopes no one else has to wait until their sixties for a diagnosis like he did.
Advocacy is visual, like a curly-haired cancer survivor posting photos in her compression bandages on Instagram, and it’s informative, like a surgical practice using social media to educate its patients on their treatment options.
Advocacy is community-minded, like a woman using Facebook to create online communities where people can bond over food, fitness, and inspiration not in spite of, but alongside their lymphedema. Advocacy is a recently-appointed executive director bringing fresh eyes and earnest passion to her new role at a national lymphedema organization.
Advocacy is giving people with lymphedema the luxury of having options when it comes to something as seemingly innocuous as a comfortable-yet-stylish pair of shoes and socks.
Advocacy looks like us. It looks like you.
There’s no one way to “do” advocacy work. We all do it, just by virtue of existing as people with lymphedema. Every time we step outside with our compression visible, every time we answer a stranger’s question, we are affirming our existence. And that’s a start.
A spotlight on our advocates
Throughout the month of March, I’ll be showcasing different types of advocacy through a series of interviews with patient advocates and organizations who push for greater visibility of lymphedema patients around the globe.
Some of them you may know, some you may not, but the ripples of their work are felt by all of us.
Stay tuned (and stay elevated!) throughout March as we celebrate some of these special people in our lymphie lives. To make sure you don’t miss a post, please subscribe to the blog via email or follow along on Facebook or Twitter. It all kicks off tomorrow!