Sjögren’s patients face ‘invisible’ symptoms, lack of understanding
Review: They often feel dismissed by healthcare providers, judged by peers
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People living with Sjögren’s disease often experience disabling symptoms that have a substantial impact on day-to-day life, even as they face dismissal from healthcare providers and judgment from peers, a new review study reports.
Based on the findings, scientists are calling for greater efforts to support people with Sjögren’s, including raising awareness of the disease and providing more resources for patients.
The study, “Patients’ perspectives of living with Sjögren disease: A systematic review of qualitative studies from the OMERACT Sjögren Disease Working Group,” was published in Seminars in Arthritis and Rheumatism.
Sjögren’s affects day-to-day life in a myriad of ways
The OMERACT Sjögren’s Working Group is part of Outcome Measures in Rheumatology (OMERACT), “an international, nonprofit, volunteer organization which applies rigorous methodology to select [goals] and outcome measures for use in rheumatology clinical trials,” the researchers wrote.
Rheumatology is a medical specialty focused on diagnosing and treating musculoskeletal diseases and autoimmune conditions affecting joints, muscles, bones, and connective or supporting tissues.
Sjögren’s disease is an autoimmune disorder that characteristically affects the salivary glands and tear ducts, leading to symptoms such as dry eyes and mouth. Still, the disease can affect multiple other tissues and organs, including the lungs, kidneys, liver, and nerves.
For people living with Sjögren’s, the disease can affect day-to-day life in a myriad of ways, and it can be hard for people who don’t have the disease — even doctors and scientists who specialize in it — to understand the impact of Sjögren’s on a person’s daily life.
“Understanding the individual experience of SjD [Sjögren’s disease] is crucial to providing comprehensive and sensitive care in the clinics,” the researchers wrote. “The pursuit of better understanding and harmonization of physician and patient perspectives is … a key attribute of … [OMERACT],” the researchers wrote.
Disabling symptoms not always obvious to others
To better understand the impact of Sjögren’s, researchers from the OMERACT Sjögren’s Working Group conducted a review of studies published up to 2024 that reported on the lived experiences of people with Sjögren’s.
A total of nine studies, based on interviews and/or focus groups, were included in the final analysis. They were published between 2014 and 2024, and involved a total of 162 adults with Sjögren’s from around the world. Patients were aged 27 to 80 years and were most commonly women (95%).
“To our knowledge, this is the first systematic review synthesizing the lived experiences of patients with [Sjögren’s disease] across a diverse geographic range,” the scientists wrote.
Thematic analysis identified five key themes: the invisibility, unpredictability, and burden of symptoms; their negative impact on function and social life; multifaceted coping strategies; limited disease awareness; and the challenges of navigating the healthcare system.
Major themes that emerged were the invisibility and unpredictability of symptoms. These may be disabling and interfere with occupational, social, and [interpersonal] relations.
Symptoms of Sjögren’s can cause a substantial burden — dry mouth and eyes can make it hard to talk, eat, and sleep — and patients often experience extreme fatigue that persists despite rest and makes it hard to just get out of bed.
Patients also reported that these symptoms tend to be unpredictable, flaring suddenly without a clear cause, which can be stressful and make it difficult to maintain routines.
And even though Sjögren’s symptoms can be disabling, they often aren’t obvious at a glance.
“Symptoms were described as ‘invisible,’ leading participants to look outwardly well despite experiencing significant internal discomfort,” the researchers wrote.
This also contributes to patients often feeling misunderstood or dismissed, facing judgment and shame from peers.
“These aspects of feeling misunderstood often led to social withdrawal,” the researchers wrote. “Major themes that emerged were the invisibility and unpredictability of symptoms. These may be disabling and interfere with occupational, social, and [interpersonal] relations.”
Rareness of condition delayed help-seeking for some patients
Adjustment and coping strategies were multifaceted, including self-management strategies such as taking breaks to avoid “energy leakage,” carrying water bottles to prevent extreme dry mouth, and practicing relaxation techniques to ease pain.
“Social and family support —though often absent — played an important role in helping individuals adjust to their illness,” the researchers wrote.
The fact that Sjögren’s is not a well-known condition also delayed help-seeking for some patients, and often led to feelings of confusion after diagnosis, with illness perceptions being “highly variable and driven largely by personal research,” the team wrote.
Moreover, patients often felt dismissed by clinicians and reported long delays in getting an accurate diagnosis. Treatment options, including medication, physical therapy, and dental care, were also frequently described by participants as burdensome or unaffordable.
These findings emphasize that “strategies that foster support, advocacy, and patients’ emotional and mental [well-being] are required” to improve the lives of affected patients, the researchers wrote. The scientists also called for “well-rounded education for healthcare professionals and early intervention to improve health-related quality of life” for Sjögren’s patients.
The working group received financial support from the pharmaceutical companies Novartis, Bristol Myers Squibb, and Johnson & Johnson. Part of one author’s salary is funded by a grant from the Sjögren’s Foundation in support of this project.
