Picture it: Vermont, 2011.
It’s January 13th. I’m twenty years old, sitting on the bed in my small college dorm room in Burlington. After nearly fifteen years of living with undiagnosed and untreated lymphedema and another five or so resisting my new diagnosis and the medically necessary compression garments, I was finally coming to terms with my swollen leg.
But I was lonely: I didn’t know anyone else with lymphedema, and couldn’t find much about it online explicitly geared towards teens or young adults.
So I opened up my laptop, registered with WordPress, and typed my first post. It was a shout into the void, to see if anyone would hear me and — hopefully — shout back.
Ten years later, I’m still typing away, sending out my shouts. Except it’s not into a void anymore: it’s to people, a community. It’s you.
And you’ve all shouted back! This past decade of blogging has been an incredible conversation. The experience has taught me so much about writing, lymphedema, and myself.
Here are just a few of the lessons learned from a decade spent blogging about lymphedema.
With medical blogging comes great responsibility.
When I started the blog, I wrote posts on topics that I, as a twenty-year-old with lymphedema, most wanted to know about, like drinking, dancing, and yoga. I used a lot of exclamation points, and blogged about my feelings and body image issues with the earnest over-sharing typical of a millennial who grew up pouring their soul out on sites like LiveJournal and MySpace.
It was sincere, but messy. I didn’t know much about blogging etiquette in those early years either, like how to properly source images or attribute content quoted from others. Just because you find something on Google, for example, doesn’t mean it’s free to use.
As I got older and the blog’s scope grew along with its readership, I realized certain responsibilities came with writing, especially when writing about medical topics: the content needed to be accurate and well-researched yet still accessible. There was also the delicate balance of sharing information without coming off as giving medical advice since I’m not a medical professional.
That sense of responsibility helped keep me accountable, too. As a patient blogging about lymphedema, I needed to practice what I preached: Why should anyone listen to me about wearing compression garments if I’m not wearing them? Who am I to talk about being an advocate if I’m not doing my part?
Eventually, I found the blog’s voice. It became less of a diary and more of a resource — a bridge, I hoped, to help connect patients to what can sometimes be inaccessible information.
Swipe through a collection of posts on lymphedema news and research topics:
Resting is medicine.
In 2017, I published forty-one blog posts; the following year, I only published fourteen. What changed?
Well, after years of working part-time jobs like housekeeping, baking pies, and running the register at antique stores and vintage clothing shops, I had a nine-to-five office job. And not just any job, but one in the marketing and communications department of a large health system, on their internet strategy team.
Writing and maintaining The Lymphie Life and its social media was already a job in itself, so between work-work and blog-work, I got burnt out fast. Things fell by the wayside: I cringe when I think about all the comments and emails languishing in my inbox without a response, or a post series left unfinished. I existed in this constant state of stress, anxiety, and exhaustion, which was neither healthy nor productive.
Glenn Schweitzer, an entrepreneur and an advocate for vestibular disorders, once said, “Resting is not laziness; it’s medicine.” And it’s true: we need to slow down, to rest. We can’t pour from an empty cup.
I’m no good at my job or my blog if I’m stretched too thin; I need to prioritize my health and set boundaries around how I spend my time, at least with the blog. It’s not something I’ve perfected (it’s well past midnight as I write this), but there’s progress. Who knows: maybe I’ll have it down pat by the next decade!
Living with lymphedema takes a village.
Before the blog, I used to feel so isolated living with lymphedema. I didn’t know anyone else who had it, and none of my friends seemed to really understand either.
It wasn’t long after launching the site that I found there were people across the globe who knew exactly what I was feeling. These people were different from me in a lot of ways, but alike in the way that mattered most: we had lymphedema.
Through The Lymphie Life, I’ve met fellow patients, medical professionals, business owners, and advocates, and a lot of the interviews I’ve done, events I’ve attended, and products I’ve reviewed are the direct result of networking within the community. More than that, some of these connections have led to solid friendships that I wouldn’t have had otherwise.
Whether it’s seeking out a lymphedema therapist, looking for lymphie-friendly clothing, or running a lymphedema blog: living with lymphedema truly takes a village.
Everyone is so eager to connect and collaborate with one another. I think it’s because we all know what that isolation feels like, but with an enthusiastic community like ours, there’s no reason to feel alone. We’re always here, often just a click away.
Swipe through a collection of posts spotlighting our community:
Fostering awareness is cyclical.
Fostering awareness is sometimes cyclical: the crux of this blog is to raise awareness about lymphedema among those who aren’t so aware, but in the process, I often find I’m not always so aware of things myself.
Whether it’s reading recently published articles on lymphatic research, or a conversation with a lymphie whose experiences differ from my own, I’m always learning and absorbing something new about lymphedema. It’s an active, ongoing process.
Lymphedema awareness is like the lymphatic system itself: it doesn’t have its own pump, but rather relies on the movement of the surrounding muscles and joints to propel the lymph fluid around.
In keeping with this metaphor, the “lymph” is awareness, and we — the community of patients and advocates — are the muscles, generating the movement to push it forward. Be it through a blog, a social media post, or a conversation with a stranger, it’s up to us to keep the momentum going.
Bookending the decade
Ten years! A lot happens in ten years. Since pressing record on that video from my dorm room, I moved across the country and back again. I quit drinking, graduated from college, and got a desk job. I lobbied for the Lymphedema Treatment Act in Washington D.C. and spoke at the National Lymphedema Network Conference in Boston.
I had some turbulent times too, but through it all, the blog kept me tethered: it was like my North Star, guiding me, holding my focus.
Last week, I was interviewed by Medical Solutions Supplier for their video series spotlighting lymphedema patients. In it, I spoke about my lymphedema diagnosis, my experiences with eating disorders and alcohol abuse, and, of course, The Lymphie Life.
I feel like the interview and the video from 2011 are the perfect bookends to these last ten years. Both The Lymphie Life and I have grown, along with the community.
When I watch that old video, I can’t help but get a little emotional: my twenty-year-old self was so earnest in her hope to reach others. I think if she knew what was ahead — the good, the bad, and the gray in-between — she’d be thrilled.
Thank you for being here with me: your readership and support has meant more than you know.
For now, I’d like to echo what I wrote in my very first blog post ten years ago: “I got big plans for this site, so keep an eye out for more to come soon!”
Be well and stay elevated,
Beautifully said Alexa, the lymphie community is so much richer for you being such an inspirational part of it ♡
How glad I am that we have met. The lymphedema community is blessed to have your voice. To many more people hearing it in 2021 and beyond!
Hello all! I just found you, and I m glad for that. I live in Greece, I have (primary) lymphedema, right foot, since my 12, now I m 45. Keep on trying, we need a community! I d like to learn about bandaging practicing in US, materials etc (I went to Germany to learn, I wonder if we have the same methods). Thank you .