Living With Sjögren’s Disease

Sjögren’s disease is a lifelong condition, but it does not have to run your life. With the right habits, support, and care, many people manage well day to day. This article covers practical ways to live with Sjögren’s, from managing dryness and fatigue to work, support, and emotional well-being.^1-3

Managing dryness across the body

Dryness can affect many areas, and each has simple steps that help:^1-3

• Skin – Choose fragrance-free moisturizers and apply them while the skin is still damp. Avoid hot water, and pat skin dry instead of rubbing.
• Nose and sinuses – Nasal saline sprays, gels, or rinses can ease dryness.
• Vaginal dryness – Vaginal moisturizers used regularly and water-based lubricants can help.

A humidifier at home and avoiding moving air can ease dryness all over.¹

Coping with fatigue and pain

Fatigue is one of the most common and difficult parts of Sjögren’s, and the tiredness is real, not imagined. Pain from joints and muscles is also common. While there is no single fix, healthy habits can help you cope. Try to get enough sleep, stay as active as you are able, and pace yourself by spreading out demanding tasks.^3,4

Talk to your doctor about fatigue and pain. They are part of the disease and worth addressing.

Diet and nutrition

There is no special diet that cures Sjögren’s. But some people find an anti-inflammatory way of eating helpful. This means more fruits, vegetables, fiber, and healthy fats like those from fish, and fewer processed foods.³

Sipping water throughout the day and limiting sugary or acidic drinks also protects a dry mouth and teeth. Talk with your doctor before making big diet changes or trying supplements.^1-3

Work, travel, and accommodations

Many people keep working with Sjögren’s. If symptoms make your job hard, you have the right to ask your employer for reasonable accommodations under the Americans with Disabilities Act (ADA).⁵

Helpful accommodations might include:⁵

• Environment changes – A humidifier at your desk, different lighting if fluorescent light bothers your eyes, or a seat away from air vents.
• Schedule flexibility – Working from home on hard days, or more time for tasks during flares.
• Helpful equipment – An ergonomic chair or wrist support to ease pain.

Simple habits help too, like keeping water nearby, following the 20-20-20 rule to rest your eyes, and protecting your skin and eyes from the sun.⁵

Disability and financial support

If Sjögren’s makes it impossible to keep working, you may be able to apply for Social Security Disability Insurance (SSDI). A few things to know: The process is long, and many people are denied at first. You will need good documentation of your symptoms and how they limit you, and your condition must be expected to last at least 12 months.⁵

The Family and Medical Leave Act (FMLA) may also let eligible employees take up to 12 weeks of unpaid, job-protected leave for a serious health condition. A disability lawyer or patient advocate can improve your chances.⁵

Building a support network

You do not have to manage Sjögren’s alone. Connecting with others who understand can ease the isolation of a chronic illness. The Sjögren’s Foundation offers support groups, networks, and patient stories that can help you feel less alone.³

Mental health and wellbeing

Living with a chronic illness affects more than the body. It is normal to feel frustrated, anxious, or low at times, especially with symptoms like fatigue and pain that others cannot see.

Caring for your emotional health is part of caring for yourself. Lean on people you trust, keep up activities that bring you joy and meaning, and tell your doctor if you feel persistently down or overwhelmed. Professional support can help.

Talk to your doctor

You are the expert on your own body. Share what you are experiencing with your care team, and ask for the support you need, whether that is symptom relief, workplace help, or emotional care. Many people live full lives with Sjögren’s, and you do not have to do it alone.