How patients experience Sjogren's
Sjogren’s – a serious disease that is often not treated seriously.
Patients are frequently told that Sjogren’s is a just a nuisance dryness disease despite the undeniable evidence showing that Sjogren’s is serious, multisystem disease. The burden of disease and functional disability are high. Severe fatigue, not dryness, is what usually keeps people with Sjogren’s from living a “normal life.” There are no laboratory tests that provide an overall measurement of disease severity. People with Sjogren’s tend to look well even when they feel terrible. Patients feel invalidated when their doctors do not acknowledge the severity of their illness.
My presentation with rheumatologists
A few months ago, I spoke with a small group of rheumatologists about the patient experience of Sjogren’s. Using my recent patient survey, I highlighted the importance of addressing the entire range of Sjogren’s features, including quality of life issues. It was a good session but does little to address the urgent need for widespread Sjogren’s clinical education. Sjogren’s care varies widely and, in many cases, remains inadequate. It is good to keep in mind that the survey focused on challenges rather than successes. I know that some of us, myself included, have rheumatologists who do a great job with Sjogren’s. Unfortunately, this does not appear to be the norm.
Clinicians who are not familiar with the systemic nature of Sjogren’s are unlikely to provide comprehensive care. Rheumatologists should monitor every Sjogren's patient for serious problems such as neurologic and organ involvement. Systemic manifestations are far more common than previously recognized. They may exist without obvious symptoms. They occur in seropositive and seronegative (SSA positive and negative) patients. Systemic features are sometimes overlooked until they have caused irreversible damage. Routine monitoring allows for early detection and intervention, the key to better outcomes. See the Glossary for definitions of “Symptoms” vs. “Manifestations” or “Features.”
The patient survey
To prepare for my talk, I asked patients from three online groups to name their top few challenges related to having Sjogren’s. Surprisingly, exactly one hundred patients responded. This means that the percentages below correspond to the actual number of responses. While not a formal research study, this survey provides a rough snapshot of patient priorities.
The survey responses fell into two large categories
1. Sjogren’s manifestations
2. The impact of Sjogren’s on patients’ lives
Sjogren’s manifestations- top challenges
The numbers below indicate the percentage of patients who name a disease manifestation as being a top challenge related to having Sjogren’s. They do not represent the total number of patients impacted by a particular manifestation, which would be much higher.
#1 Fatigue physical and cognitive fatigue (brain fog) often listed together 50%
#2 Painful neuropathy and autonomic neuropathy often listed together 20%
#3 Various gastrointestinal (GI) features 17%
#4 Sicca (dryness) 8% eyes, 8% oral. No one named both 16%
#5 Joint pain, swelling, and stiffness 12 %
The impact of Sjogren's on patients' lives
Greater than half of respondents across all the “impact” topics expressed frustration about the lack of clinician knowledge about Sjogren’s. Patient quotes are shown in light teal.
The numbers below indicate top challenges related to having Sjogren’s. They do not represent the total number of patients who experience a particular challenge, which would be much higher.
# 1 Difficulty getting care for systemic (non-sicca) manifestations 37%
Rheumatologists sometimes tell patients that Sjogren’s is not serious and does not need ongoing monitoring. A major concern was that no one was in charge of their overall care, that there was no “medical quarterback.” Several patients talked about needing to figure out Sjogren’s-related problems and seek specialty consultations on their own.
“My rheumatologist dismisses everything I’m experiencing except sicca symptoms.”
“It is frustrating to be more knowledgeable about Sjogren’s than my medical providers.”
“I have to me my own doctor, and I’m not trained to do that.”
#2 Social and emotional burden 24%
Friends, family, and health care providers often do not understand the devastating impact of Sjogren’s. Many people with Sjogren’s can no longer work or participate in activities they used to enjoy. Doctors sometimes express skepticism when patients describe symptoms other than dryness, especially if they are severe. Clinicians sometimes tell patients that a known Sjogren’s feature is psychologically based. Disbelief and dismissive attitudes are a source of emotional distress and mistrust.
“It’s exhausting and depressing trying to find a doctor who listens and takes you seriously and understands Sjogren’s. I often avoid medical care because of this.”
“Family and friends don’t understand or believe me.”
#3 Time consuming burden. Managing Sjogren's is a full time job. 21%
Daily self-care is time-consuming and necessary. Regardless of lifestyle efforts, many with Sjogren’s cannot count on being functional, usually because of fatigue. Multiple medical and dental appointments add to this burden. “I cannot do many things that most people take for granted.”
“I can never count on keeping my commitments.”
#4 Getting diagnosed 13% The 13% number would be much higher in a group of people who were recently diagnosed or seeking diagnosis. Prolonged delays to diagnosis are the norm. “I diagnosed myself after many years of multiple symptoms. I researched which blood tests I needed, presented this to my PCP who ordered testing which confirmed the Sjogren’s diagnosis.”
“My doctor does not think seronegative Sjogren’s exists.”
#5 Toxic financial stress 8%
The direct expenses from Sjogren’s medical and dental care, along with lost employment income, sometimes create severe financial stress.
“I spent $ 9000 in one year out of pocket on dental care”.
“I cannot afford my medications and eye care products. “
“I had to retire early due to undiagnosed Sjogren’s. Without a diagnosis, I did not qualify for disability retirement. It was financially devastating.”
Sjogren’s patients carry a high burden of disease. It should not be so difficult to find adequate care for a common, serious disease. This survey, online patient discussions, and my teaching experience with primary care providers all point to the lack of clinician knowledge as a major barrier to comprehensive care. While Sjogren’s Advocate was created to help patients get the care they need, it is even more important to remedy the gaping hole in Sjogren’s knowledge.
Most clinicians want to provide good patient care. Rheumatologists depend on leadership organizations and medical education programs to provide up-to-date information. This almost never happens. Sjogren’s is missing or barely mentioned by most education programs, including at the recent annual American College of Rheumatology (ACR) meeting where five Sjogren’s sessions were outnumbered by hundreds of sessions for closely related diseases. The clinicians who do stay current on Sjogrens' usually do so on their own initiative.
Rheumatologists and other clinicians need practical guidance for diagnosing, monitoring, and managing Sjogren’s disease. The ACR and Sjogren’s experts need to step up to the plate.
A special thank you to Valerie Miller, who created the wonderful cartoon.