One of the toughest parts of living with Sjögren’s syndrome is you can’t always toddle down the road to your local Sjögren’s patient get-together.
There are no flashing neon signs or telltale physical clues that help people living with the disease pick each other out in a crowd. And even though the disease impacts all aspects of life, it’s easily mistaken for something else and hard to explain to others.
Fatigue, along with dry eyes and joint pain, swelling, and stiffness, are common Sjogren’s symptoms that are easily mistaken for something else.
What’s the best way to combat a conundrum like this? In two words: “Education” and “Awareness.” You’ve got to get the word out there about what Sjögren’s syndrome is and how it impacts people, and you’ve got to do it in a way people will remember. Maybe the best way to help people remember a complex idea is through stories, and the best stories can arguably be found in The New York Times.
The New York Times’s Health Page has an online Patient Voices series that features brief audio interviews with people combating different diseases and conditions.
The Sjögren’s syndrome page features five patients sharing how the disease affects their day-to-day life and outlook—patients like Heather Lewis, who relates the heartbreak of trying to explain to your four-year-old why you don’t have the energy to play. Patients like Cathy Reppenhagen discuss how many people with Sjögren’s are reluctant and embarrassed to talk to others about it—because on the surface the dry eyes and fatigue can seem like “not a big deal” to the people standing outside looking in. But as patients like Angela Lundberg attest, even something as “simple” as dry eyes can bring excruciating pain and daily challenges.
If you’re looking for a good place to jumpstart a Sjögren’s syndrome conversation with someone you know, why not start here and then share your own story?