A few weeks ago, on May 24th, I participated in the National Lymphedema Network’s Stomp Out Lymphedema Walk in Baltimore, MD. It was such a gorgeous day, perfect for meaningful fellowship with lymphies, therapists, and family members—and a gorgeous day for walking, too!
Meeting other people with lymphedema is always exciting—it’s kind of like discovering friends you never knew you had. Don’t get me wrong: I’m beyond grateful for the people in my life who listen patiently while I vent my frustrations about living with lymphedema (or talk me through a mild meltdown at the shoe store!). They’re amazing support systems who get me through the difficult times and celebrate with me through the good, but there’s just something so validating about being face-to-face with another person who is living with lymphedema and hearing “yes—I feel that, too!”
There were other lymphies from the blogosphere at the walk, like Grace Gaylord of Gracefully Lymphedema, Anglecia “Glee” Edwards, and Robin Miller of Life with Lymphedema. It was weird (in the best, most positive way!) to finally meet the women behind the photos and the blog posts, because it felt as though we already knew each other really well. We talked all things lymphedema: garments, comfy lymphie-friendly clothes and shoes, and self-care tips. There was also a lotta laughter and silly selfies, and happy sighs of “it’s so good to be able to talk about this.” I gained a whole new branch to my support system—some that I talk to almost daily! Who knew?!
Another thing I really enjoyed about the walk was not worrying about my leg. It was incredibly liberating to be around a large group of people and for once not be self-conscious about wearing shorts. I hardly ever do that, so the walk was a great safe place to get comfortable being in public with my garment visible. (I can always use practice with that!) A lot of the lymphies told me that they used to struggle with wearing their garments so visibly, but now they shrug off any self-conscious embarrassment: why should they compromise their health and well-being out of fear of a couple stares or questions? A very good point, for sure. Needless to say, since the walk I’ve become much, much more compliant about wearing my garment every day.
I was—and remain—empowered by the experience and inspired by the people I met there. And not just the fellow lymphies, but the therapists who work with them and the family who love and support them, too. It’s easy for us who are living with a chronic medical condition to feel alone and misunderstood, so days like this are valuable and important reminders that our community is very much here—and thriving!
What a gorgeous, gorgeous day :)
That is a huge amount of money! Congratulations to everyone. I would love to meet even a small roomful of people with my lymphedema just to trade tips and stories. You guys rock!
Reblogged this on Musings of an Art Therapist/Artist and commented:
I always love to read when people find other fellow life travelers who share their struggles. It’s why I love blogging and social media. The therapeutic value is so great. And seeing people in person who share your struggles, in this case, Lymphedema, is of course, transformative!
I have never met anyone else with Lymphedema, but I totally understand where you are coming from, and thank you for putting it into words. Who would have thought I would miss wearing shorts in public.
I am glad you found the blog and commented, Bob!
It’s true that we end up missing things that seem so innocuous, like wearing shorts in public, and it can be alienating sometimes as a lot of people don’t readily understand how big of a deal that can be. However, with a lot of self-work and a positive support system in our corner, we can still do those things! It can take some time (and it’s okay for it to take some time), and obviously some days are worse than others in terms of self-confidence, but we CAN do it—whether it’s wearing shorts in public or just wearing them around the house, we can get there. And so can you!
Be well, and stay elevated!
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