Living with Sjögren’s Disease

For many people, Sjögren’s disease isn’t just a medical term, it’s a daily reality. It affects your eyes, your mouth, your energy, and sometimes even your mood. Simple tasks, like reading a book or enjoying a meal, can feel harder than they used to. But living with Sjögren’s doesn’t mean life stops, it means learning new ways to navigate it.
 

Real Stories, Real Challenges
Sarah, 34, remembers the first time she realised her fatigue wasn’t just “being busy.”

“I’d wake up exhausted, even after a full night’s sleep,” she says. “I thought I was failing at life, but then I learned it was my body telling me to slow down.” Like Sarah, many people with Sjögren’s experience persistent dryness in their eyes and mouth, joint pain, and fluctuating energy levels.

For Emma, 42, mornings are never simple. Waking up with dry eyes, a parched mouth, and exhaustion that doesn’t go away with sleep, she often feels like she’s running a race she didn’t sign up for.
“Some days it feels impossible to get through a meeting or even make breakfast,” Emma says. “But I’ve learned to break my day into small, manageable steps. It’s not perfect, but it works.”

Sjögren’s disease is often thought of as a condition that mostly affects women, but men can experience it too. Tom, 38, is one of the few men diagnosed with the disease, and his journey has been both challenging and enlightening.
“I never thought I’d have an autoimmune disease,” Tom recalls. “When I started experiencing constant fatigue, dry eyes, and joint aches, I thought I was just stressed or overworked.” It took months of doctor visits before he received a diagnosis.

Like many patients, Tom struggles with unpredictable energy levels. “Some days I feel fine, other days I can barely get through my workday,” he explains. Managing the symptoms requires careful planning and a lot of self-awareness.



Tips from the Community



1. Hydration and Eye Care
   Carrying a water bottle and using saliva substitutes can make a big difference. Preservative-free eye drops or gels help protect your eyes and reduce discomfort throughout the day.
2. Pace Yourself
   Fatigue can be unpredictable. Prioritising your tasks, taking breaks, and listening to your body is not a sign of weakness, it’s a way to protect your energy.
3. Find Your People
   Support networks are invaluable. Online forums, patient communities, and groups like Sjögren’s Australia connect you with others who truly understand what it’s like to live with this disease.
4. Speak Up About Your Health
   Don’t be afraid to ask your doctors questions or explore new treatments. Advocating for yourself ensures your care matches your needs.
5. Mind and Body Wellness
   Gentle movement, hobbies, mindfulness, and self-care routines can improve both physical and emotional well-being. Even small steps count.

A Message of Hope
While Sjögren’s disease is chronic, it doesn’t define your life. With the right strategies, community support, and self-compassion, it’s possible to live fully and meaningfully.

Join the Community
Sjögren’s Australia is here to support you every step of the way. From online resources to local support groups, you don’t have to face this journey alone. Connect, share, and find hope with others who understand.