First things first. If you’re in the U.S., Sjogren’s is pronounced thus: SHOW-grin’s. And because the physician it’s named after was Swedish, there should be little dots above the “o”: Sjögren’s.
Everybody clear on that? Great! Moving on…
Being human means we will have good days and bad days. On our good days, we’ll hug our loved ones, we’ll smile often, and we’ll forgive readily. On our bad days? Things will just seem, well… bad. Add in having a rare, chronic disease, and those bad days will be even worse.
It can sometimes be easy to let negative challenges dictate our attitudes. For whatever reason, it’s safer to assume things won’t ever look up—that we’re at the mercy of grief and pain. The hard part is… we’re the only ones who can pull ourselves out of those pits. Still, it doesn’t hurt to have a little motivation from someone who has “been there”—someone who can show you the way out of the darkness and point out places where you can put your feet.
If you’re living with Sjogren’s syndrome AND/OR you’re big into tennis, you’ve probably heard the name Venus Williams. Because 1) she’s pretty much the best ever at tennis, and 2) she has Sjogren’s.
Venus Williams is a badass, to put it simply. She has Sjögren’s and she’s on a mission to share her story in hope of spreading awareness. As the Honorary Chairperson of the Sjögren’s Syndrome Foundation’s (SSF) Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program, she’s passionate about making a difference in her community, inspiring others with rare diseases to believe in themselves and their abilities.
Honorary Chairperson or not, it’s clear by how active she is on the tennis court that she’s not going to let Sjögren’s beat her. Venus should stand as a stark reminder of hope for those suffering from any chronic disease. Yes, she’s famous, and subsequently, privy to various management resources. But a positive, proactive attitude can reveal footholds where on the slippery slopes, and help take a person places. A negative one will do nothing but trip you up and hold you hostage in darkness.
So on those bad days, take a swing at life a la Venus Williams–maybe you’ll find yourself walking right on past the negatives Sjögren’s syndrome is throwing in your path that day!
Some would tell you celebrities acting as rare disease spokespeople is misleading. What do you think? Start the conversation below!