Jennifer Douglas: Living with Sjögren’s

One of the first things you learn when you are diagnosed with Sjögren’s is that there is no cure. It really becomes about managing symptoms and improving quality of life. For me, my main Sjögren’s symptom was dry eyes. My eyes hurt and felt swollen, and my eyelids would get red splotches and feel really heavy. It didn’t matter what makeup I wore, it seemed to irritate my eyes. Looking at a computer screen made them feel worse. So, when I first started seeing Dr. Barnett, I was willing to try almost anything.

“On average, it takes 3-5 years to diagnose Sjögren’s and as primary eye care providers, we can help make this diagnosis sooner.” -Melissa Barnett, O.D.

We began with visits every 3-4 months, and I looked forward to each new product or step that Dr. Barnett would suggest and tracking its effectiveness in my next check-in. The best thing of all was when I started coming to my appointments and hearing that my eyes looked good! The more established my routine became, the more I saw my quality of life and my eye health improve. They didn’t hurt as much or feel as swollen; they weren’t as dry or red; makeup didn’t feel as irritating, thanks in part to finding a good mascara; and long days in front of a computer did not feel quite so long.

• Gentle cleansing
•  Warm compresses
•  Restasis drops & nighttime gel in each eye
•  Humidifier during sleep
•  Take fish oil
•  Use eye drops as needed
•  Large and protective sunglasses We settled on a daily eye care routine that involves a number of steps, including gentle cleansing followed by warm compresses, Restasis drops and a nighttime gel in each eye—which is especially soothing after a long or stressful day—as well as using a humidifier while I sleep. I also take fish oil, and of course, use eye drops as needed throughout the day. And I always have my sunglasses on me, the larger and more protective the better. Admittedly there are nights when I’m tired and don’t feel like doing each step, but I know that the benefits from taking the few extra minutes far outweigh the consequences of neglecting my routine.

“When Jenny first came in, she was in so much pain, with so many symptoms, and she’s been so incredible over the years with the management regimen so that her eyes feel better and she feels better.” -Melissa Barnett, O.D.

Now that my eye health is more under control, my appointments are still very important to me. I continue to see Dr. Barnett at least twice a year, and even when COVID-19 hit I knew that I did not want to miss my regular check-ins, whether they were in person or via telehealth. Looking back, it’s almost hard to recall what my eyes were like 10 plus years ago, but I remember enough to know that I never want them to feel that way again. And none of this would have been possible without the amazing care of my wonderful optometrist, Dr. Barnett.

No discussion regarding Sjögren’s-related dry eyes would be complete without talking about the Sjögren’s Foundation. The moment I was diagnosed, I signed up to be a member. It was encouraging and comforting to know I was joining an organization that advocates on its members’ behalf and supports Sjögren’s research. It’s a community that understands what it is like to have Sjögren’s, and as a member, I have participated in several events over the years including the California Virtual Walk for Sjögren’s. I was honored to be part of Dr. Barnett’s team, Eyes on Sjögren’s, and feel fortunate to be her patient.

Melissa Barnett, O.D.

Dr. Melissa Barnett is a principal optometrist at the University of California, Davis Eye Center, in Sacramento and Davis, California. She is an internationally recognized key opinion leader, specializing in dry eye disease and specialty contact lenses. Dr. Barnett lectures globally and publishes extensively on topics including dry eye, anterior segment disease, contact lenses and creating a healthy balance between work and home life for women in optometry. Find an AOA doctor of optometry near you.