Sjögren’s syndrome is a chronic autoimmune disease that affects millions of people worldwide, yet it often goes undiagnosed or misdiagnosed for years. Characterized primarily by dryness in the eyes and mouth, this condition can also cause widespread systemic symptoms that mimic other diseases. Because of its diverse presentation and overlap with more familiar illnesses, getting a definitive diagnosis of Sjögren’s can be a long, frustrating journey for many patients. This article explores the reasons behind diagnostic delays, the tools currently used for detection, and how better awareness can lead to earlier identification and improved outcomes.

Understanding Sjögren’s Syndrome

Sjögren’s syndrome occurs when the immune system mistakenly attacks the moisture-producing glands in the body, such as the salivary and lacrimal glands. This leads to dryness, inflammation, and in some cases, damage to other organs like the kidneys, lungs, nerves, or skin.

There are two main types:

  • Primary Sjögren’s syndrome: Occurs on its own.

  • Secondary Sjögren’s syndrome: Occurs alongside other autoimmune conditions like rheumatoid arthritis or lupus.

Symptoms range widely from mild to severe and may include fatigue, joint pain, dry skin, digestive issues, and neurological complications in addition to dryness. This variety contributes significantly to delayed or incorrect diagnoses.

Why Diagnosing Sjögren’s Takes So Long

1. Nonspecific and Overlapping Symptoms

One of the biggest challenges in diagnosing Sjögren’s is that its symptoms mimic those of many other illnesses. Fatigue, joint pain, and dryness can be seen in conditions such as:

  • Rheumatoid arthritis

  • Lupus

  • Fibromyalgia

  • Chronic fatigue syndrome

  • Menopause

  • Medication side effects

As a result, symptoms are often attributed to aging, hormonal changes, stress, or unrelated conditions. Unless a doctor specifically suspects Sjögren’s, it may not be included in the initial differential diagnosis.

2. Variable Symptom Onset and Progression

Symptoms may appear gradually and inconsistently. A person might experience dry eyes for years before developing dry mouth or systemic signs like nerve pain or digestive discomfort. These staggered symptoms make it harder to connect the dots to a unifying diagnosis.

Furthermore, some individuals may only have mild dryness or exhibit mainly extra-glandular symptoms, which can be misleading.

3. Lack of Awareness Among Healthcare Providers

While awareness of Sjögren’s is increasing, many general practitioners and non-specialists are still unfamiliar with the full range of symptoms and complications. Without training in autoimmune diseases or rheumatology, healthcare providers may overlook the possibility of Sjögren’s and fail to refer patients to a specialist in a timely manner.

4. No Single Definitive Test

Unlike some conditions that can be diagnosed with one clear lab result, Sjögren’s diagnosis often requires a combination of tests and clinical evaluation. These may include:

  • Blood tests for autoantibodies (e.g., anti-SSA/Ro, anti-SSB/La)

  • Schirmer’s test to measure tear production

  • Salivary flow tests

  • Lip or salivary gland biopsy to look for immune cell infiltration

  • Imaging tests like salivary gland ultrasound or sialography

Even with testing, results may be inconclusive. For example, not all patients have detectable autoantibodies, and biopsy findings can vary.

5. Gender and Age Biases

Sjögren’s syndrome predominantly affects women over the age of 40, but men and younger individuals can also develop it. Unfortunately, healthcare providers may be less likely to suspect the disease in younger people or men, leading to further delays in diagnosis.

Additionally, some symptoms may be mistakenly attributed to menopause in middle-aged women, delaying further investigation.

The Diagnostic Process: What Patients Experience

Patients often describe the diagnostic process as frustrating and exhausting. It may involve:

  • Visiting multiple doctors over several years

  • Receiving incorrect diagnoses (e.g., anxiety, depression, fibromyalgia)

  • Being told symptoms are “in your head”

  • Being prescribed medications that don’t help or worsen symptoms

Eventually, a referral to a rheumatologist or another specialist may lead to further investigation and proper diagnosis, but only after years of discomfort and uncertainty.

Consequences of Delayed Diagnosis

When Sjögren’s goes undiagnosed or untreated, the following issues may arise:

  • Worsening of dryness symptoms, leading to oral infections, dental decay, and corneal damage

  • Progressive organ involvement, including lungs, kidneys, liver, and nervous system

  • Severe fatigue and pain, affecting quality of life

  • Increased risk of lymphoma, which requires early detection and monitoring

Early diagnosis is critical for initiating treatment, managing symptoms, and monitoring for complications.

Improving Diagnosis and Reducing Delays

Efforts to improve the diagnostic timeline for Sjögren’s syndrome include:

1. Raising Awareness

  • Educating primary care providers, dentists, and eye doctors about the broader symptoms of Sjögren’s

  • Promoting public awareness campaigns to help patients recognize signs and seek help sooner

2. Screening Tools

  • Development of symptom checklists and clinical decision tools to help general practitioners identify candidates for referral

3. Advances in Biomarkers

  • Research into more sensitive and specific biomarkers for earlier detection

  • Exploration of saliva-based tests or non-invasive imaging

4. Patient Empowerment

  • Encouraging patients to track symptoms and seek second opinions when necessary

  • Providing resources for support groups and advocacy organizations

Role of Specialists

A rheumatologist typically plays a central role in diagnosing and managing Sjögren’s. However, patients may also need a multidisciplinary team, including:

  • Ophthalmologists for eye complications

  • Dentists or oral medicine specialists for dry mouth and dental care

  • Neurologists, pulmonologists, or nephrologists for systemic involvement

This team approach is essential for managing the wide-ranging effects of the disease.

Conclusion

Sjögren’s syndrome is a misunderstood and underdiagnosed autoimmune condition. Its subtle onset, overlapping symptoms, and lack of a definitive test make the path to diagnosis long and difficult for many individuals. However, increased awareness, better diagnostic tools, and a multidisciplinary approach can shorten this timeline and improve outcomes. Recognizing the early signs and advocating for comprehensive evaluation are key steps toward timely diagnosis and effective care. With earlier identification, patients can receive the support they need to manage symptoms and protect their long-term health.