Did you know Lymphedema Awareness Day is over twenty-five years old? The first documented day of awareness wasย on March 6th, 1994, by the National Lymphedema Network; the movement went global in 2016 when the Lymphatic Education & Research Network established an official World Lymphedema Day.
Between 1994 and 2016 — and in the years since — the lymphedema community has adopted March 6th as our day for awareness and education; others claim the entire week, and many the full month.
No matter what day(s) you recognize in the name of lymphedema, however, every day can be an opportunity to raise awareness!
Looking for ideas? Below are three ways you can advocate for lymphedema in your daily life.
Keep informational “goodie bags” handy.
“What’s wrong with your leg?” “What’re you wearing on your arm?” We’ve all been asked to lymphsplain ourselves at one point or another, but rather than offer the same explanation over and over, what if you gave a lymphie souvenir instead? Something tangible, that folks could take with them?
Well, that’s what Kasey Rubin did.
Rubin, mother of the little lymphie Cora Jean, is no stranger to — well, to strangers. People approach her all the time about her daughter, asking questions and making comments about her swollen hands. Sometimes they’re genuinely curious, while other times they’re straight-up rude.
Determined to turn these interactions into teachable moments, Rubin created educational packets containing pamphlets from the Lymphedema Treatment Act and cards printed with Cora’s story, all neatly held together with a custom awareness bracelet. She keeps a few of these stashed in her purse or glove box so she’s always prepared to hand them out to the next curious stranger.
I love this idea: not only does it start a conversation, but it continues it by giving folks additional resources to learn more about lymphedema and, hopefully, share their newfound knowledge with someone else.
Interested in making your own informational goodie bags? The Lymphedema Treatment Act offers a great selection of flyers, cards, and fact sheets that you can download and print yourself; you can also order online and have the materials shipped to you.
If you really want to get creative, you can create your own cards and unique trinkets to share. Print-on-demand sites like Zazzle, Moo.com, and VistaPrint make it easy to design and order things in bulk, or you can grab a couple friends for a craft night and make them by hand.
Practice a-“wear”-ness to get the conversation started.
One of my favorite awareness campaigns is the British Lymphology Society’s “Sock it to Lymphoedema!” challenge, where they encourage people to wear odd socks during Lymphedema Awareness Week and share hashtagged photos on social media.
Last year my coworkers participated in the challenge with me. It was a lot of fun, and as tickled as I was to not be the only person in the office wearing mismatched socks for once, I was also really touched by their enthusiasm to join in raising awareness about lymphedema.
Every day we wear our awareness on our (compression) sleeve: our compression garments are often enough of a conversation starter, but if you’re feeling bold, companies like LympheDIVAs, Juzo, and medi offer compression in bright colors and fashionable prints that will really break the ice.
You can also sport a t-shirt or button (like the ones designed by yours truly!) to invite people to ask about your lymphie limb.
Awareness doesn’t have to be loud, though; it can be as subtle as wearing the color teal, or accessorizing with a blue butterfly. Donning these symbols of lymphedema are a great way for supportive friends and loved ones of lymphies to show their solidarity, too.
Don’t just share the lymphedema statistics: share the lymphedema experience.
As patients, we are the best advocates for awareness. We know better than anyone what it means to live with a chronic and progressive condition — one that is often unrecognized, misdiagnosed, and under-treated.
Sharing the lymphedema experience is just as important as sharing the statistics and research. Our stories are an effective way to get people to connect with the cause and, hopefully, join us in fighting the good fight for the increased awareness, research, and access to care we so badly need.
We have lymphedema: our perspectives matter, and our voices help give context and deepen peoples’ understanding of what it’s like to live with something like this. Whether it’s posting an Instagram photo of your compression bandages or sharing a quick retweet like the one below, anything helps to get lymphedema further into the public consciousness.
Hug me, I'm rare! ๐ฆ๐ Check out this thread to learn more about my rare disease, #primarylymphedema.#RareDiseaseDay #RareDiseaseDay2020 #lymphedema #lymphoedema https://t.co/laJG4BKtUT
— ๐๐ฅ๐๐ฑ๐ ๐๐ซ๐๐จ๐ฅ๐๐ง๐จ (@alexaerco) February 29, 2020
It’s important to note that just because you have lymphedema, it doesn’t mean the onus is on you to educate everybody you come across: you can share as little or as much of your story as you want to. Your health is your own business, so if you want to keep things private, that’s your right to do so.
There are other ways to get lymphedema out there without disclosing your own status as a patient. For example, if you’re comfortable doing so, you can share an article about lymphedema research or a post from another patient’s blog.
Doing what you can, no matter how small, is guaranteed to have an impact. At the very least, one more person will know the word “lymphedema,” and that’ll be one more person than the day before.
When I hear about the light your home teal.campaig on March 6, decided to โhighlightโ it. I had a small a small streak of hair โhighlightedโ teal in order to help raise awareness.
I have shared the picture on social media along with the Light your Home Teal Campaign information
Iโd like to hear opinions about the best compression stockings. I wear thigh high open toe. They persistently fall down. Iโm spending $100 per pair and have wasted enough money on aggravating hose. Sorry this is off topic.
Hi Sally! There are several great FB Lymphedema sites you could join and post your question. You will get some great responses from those who have/had the same difficulty as you are having.
Hi Sally, I have tried everything to keep my stocking up and also be comfortable and have never found anything that works. I use the Mediven brand in a thigh high size. I sew the stocking onto a shapewear. I have lymphedema in my right leg only so not sure if it would be as easy if you need to wear a stocking on both legs. Sewing it on to shapewear has made my life so much easier. I can be very active and it stays in place.
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