When you’re living with a rare condition like Sjögren’s syndrome, sharing your diagnosis with a famous name can be both a blessing and a curse.
Obviously, it’s helpful to be able to connect something most people don’t understand to something, or someone, they do understand. The downside is that people can jump to conclusions about you because of something your famous spokesperson said or experienced.
Take tennis pro Venus Williams, who just so happens to be living with Sjögren’s syndrome.
Venus and her sister, Serena, are among the greatest tennis players of their generation, and their vibrant style and energy have arguably brought a new legion of fans to the sport—to mention nothing of much-needed diversity and vocal proponents of equal pay for women.
When Venus was diagnosed with Sjögren’s Syndrome in 2011, it helped explain her years of troubling symptoms like energy-sapping fatigue, joint pain, and swollen hands.
Once she had a diagnosis, Venus was open about the challenges she faced and the relief she felt at having an answer—which is fantastic, because all too often people living with mystery symptoms need to hear that they’re not alone.
And when the person telling you that is someone everyone knows and admires, all the better!
So here’s where it can get a little dicey. After her diagnosis, Venus switched to a raw vegan diet as a way to help relieve some of the painful symptoms of Sjögren’s. Some doctors and nutritionists believes that the types of foods found in a vegan diet have anti-inflammatory properties, which may help reduce joint inflammation in people with Sjögren’s Syndrome…the key word here being “may.”
I’ll admit: I’m neither a doctor nor a nutritionist (and sadly, I play neither on television). But I do know that studies have come to no consensus whether a vegetarian or vegan diet have superior health benefits for people with inflammatory symptoms.
That means that for every breathless report that an all-vegan diet can reduce your flares, there’s another tutting rebuttal of the unforeseen health consequences. So really, the truth can be wholly dependent on the individual and their body’s reaction to a vegan diet.
What does that have to do with Venus?
Not much, except that many people will—consciously or unconsciously—give her outcome more weight than, say, Bob down the road who went into the hospital after trying a 7-day raw vegan detox diet (and probably did it wrong).
Which means a lot of people will assume if it’s good enough for Venus, it’s good enough for anyone with Sjögren’s syndrome.
Bottom line: Having that celebrity name and face to help explain a rare condition is great for raising awareness and getting the conversation started with others. But the most important conversation is the one you have with your doctors.
So be happy for Venus that she found something that works for her, and then go out and find what works for you!