A Long Road to Diagnosis: One Woman’s Journey With Sjögren’s Disease

For years, Janet Church went from doctor to doctor searching for a diagnosis as unexplained symptoms disrupted her life. Medical visits and endless tests led to mounting frustration, but no one could pinpoint the cause. Then came the severe migraines and exhaustion so overwhelming that she found herself sleeping up to 16 hours a day, at which point she was admitted to the hospital. It was clear something was wrong, even though no one could tell her exactly what it was.

Everything changed when Janet visited a diagnostician who took a fresh look at her medical history and asked her one simple but life-changing question: Has anyone tested you for autoimmune diseases? That question led her to a rheumatologist, and finally, to the diagnosis she had been seeking: Sjögren’s disease.

What Is Sjögren’s Disease? 

Sjögren’s is the second most common autoimmune rheumatic disease, affecting up to 4 million people in the United States alone.^1,2  Despite its prevalence, the disease has such a wide-ranging array of symptoms that it can be unpredictable and many people remain undiagnosed.^3,4

Rachael A. Gordon, MD, PhD, and assistant professor of rheumatology at the University of Pittsburgh School of Medicine, has spent years treating patients with the disease. “Sjögren’s is a systemic autoimmune disease where the body’s defense system, which usually fights infections, mistakenly attacks healthy tissues,” she explains. “It mainly affects the glands that make saliva and tears, causing dry mouth and dry eyes. However, it can also impact other parts of the body, including the lungs, kidneys, joints, and nerves, leading to a range of symptoms beyond dryness.” 

These complex symptoms make diagnosis challenging and symptoms often mimic other conditions like lupus, rheumatoid arthritis, fibromyalgia, and even menopause. As a result, it takes patients several years, on average, before finally getting an answer.⁵

“A thorough evaluation is key to accurately diagnosing Sjögren’s and ensuring each patient feels confident in their care,” Dr Gordon says. “I walk my patients through the different tests we may need based on their symptoms. This can include blood tests, imaging, or in some cases, a small biopsy of the minor salivary gland to confirm the diagnosis.”

Janet’s Experience With Sjögren’s Disease

Receiving a diagnosis meant clarity, validation, and the start of understanding a condition that had shaped Janet’s health for years. Although there is no cure for Sjögren’s, she was able to understand her symptoms and adjust to navigating life with the disease.⁶ “You have to learn how to manage it to the best of your ability, and management does not always prevent progression,” she explains. 

For people like Janet, living with Sjögren’s disease can come with a serious burden.⁷ Excessive dryness, severe fatigue, chronic pain, and systemic complications don’t just interfere with daily activities — they can reshape lives.⁸ For example, Janet made the difficult decision to restructure her professional life, selling her technology marketing firm and stepping down as CEO to have more flexibility as a consultant. "This way, I could control my own hours and time," she shared, which is crucial for someone who may feel sick on any given day. 

“There’s always something that hurts,” adds Janet. And the pain isn’t just physical. Living with Sjögren’s can also affect a patient’s mental health, social life, and overall quality of life.⁹ 

Finding Purpose

Soon after her diagnosis, Janet attended a conference organized by the Sjögren’s Foundation*, an organization that helps patients, doctors, and researchers come together as a community to discuss the complexities of the disease. She saw the value in their mission right away, and it wasn’t long before she rose to becoming a board member. 

Today, Janet has come full circle – she’s back to being a CEO, but this time, she’s leading the Sjögren’s Foundation. For Janet, the foundation isn’t just a place of advocacy – it’s a source of empowerment. In her role, she says, “it’s an asset that I have this disease, instead of a liability.” As CEO, her vision is for every Sjögren’s patient to receive a timely diagnosis, have access to Sjögren’s-knowledgeable doctors, and receive treatments to better manage the disease. 

Beyond her work, Janet has built a strong support system. She has friends who understand her needs — like a travel buddy who always chooses humid destinations, knowing how hard it is for her to tolerate dry climates — and people with whom she can “say anything or cancel when needed.” While she’s surrounded by people who accept every part of her, she also makes time to be there for them, recognizing the importance of showing up for those who show up for her. Living with Sjögren’s takes daily effort, but she focuses on what brings her purpose and makes space for the small, joyful moments that help her move forward.

Dr. Gordon’s advice for supporting someone with Sjögren’s? “Acknowledge that many symptoms of Sjögren’s are sometimes invisible. Be patient and flexible — energy levels and symptoms may vary from day to day.”

The Path Forward

Looking back, Janet recognizes that her experience isn’t unique. Many people with Sjögren’s spend years searching for answers as their symptoms may be misdiagnosed or misunderstood.³

Her advice? Be persistent with your doctors, seek out a supportive community, and above all, remember that you are not alone. Janet is adamant that the disease is just one part of her journey, and she wants others to know that there’s so much more to life beyond managing it. “You have to find moments of joy to keep moving forward,” she says. 

If you or someone you know is experiencing symptoms of Sjögren’s disease and looking for more information, talk to your doctor or visit https://www.novartis.com/us-en/patients-and-caregivers/diseases/sjogrens-disease.

*Novartis is not affiliated with, sponsoring, or responsible for the content on the Sjögren’s Foundation website.

References:

1. Sjögren’s Foundation. The Foundation Recognizes Rare Disease Day 2024. Accessed March 27, 2024. https://sjogrens.org/blog/2024/the-foundation-recognizes-rare-disease-day-2024

2. National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on Selected Immune Disorders and Disability. Sjögren’s Disease/Syndrome. Accessed March 17, 2025. https://www.ncbi.nlm.nih.gov/books/NBK584486/

3. Sjögren's Foundation. Understanding Sjögren's / Frequently Asked Questions. Accessed March 27, 2025. https://sjogrens.org/understanding-sjogrens/frequently-asked-questions

4. Kassan SS, Moutsopoulos HM. Clinical manifestations and early diagnosis of Sjögren syndrome. Arch Intern Med. 2004;164(12):1275-84. doi: 10.1001/archinte.164.12.1275

5. Sjögren’s Foundation. Understanding Sjögren’s / Treatment. Accessed March 27, 2025. https://sjogrens.org/understanding-sjogrens/treatment

6. Milic V, Grujic M, Barisic J, et al. Personality, depression and anxiety in primary Sjögren's syndrome – Association with sociodemographic factors and comorbidity. PLoS ONE. 2019;14(1): e0210466. doi:10.1371/journal.pone.0210466 

7. Perella C, Steenackers M, Robbins B, et al. Patient experience of Sjögren’s disease and its multifaceted impact on patients’ lives. Rheumatol Ther. 2023;10:601–614. doi:10.1007/s40744-023-00531-7

8. Lackner A, Ficjan A, Stradner MH, et al. It’s more than dryness and fatigue: The patient perspective on health-related quality of life in primary Sjögren’s syndrome – A qualitative study. PLoS ONE. 2017;12(2): e0172056. doi:10.1371/journal.pone.0172056