Why Don't Doctors Take Sjogren's Disease Seriously?
Understanding the education gap, why patients and families feel dismissed, and how to find a rheumatologist who understands Sjogren’s disease.
Imagine taking your car to a mechanic because it won’t start.
You explain the problem, but the mechanic specializes in tires. They check your tires, tell you everything looks fine, and send you on your way.
But your car still won’t start.
Does that mean there’s nothing wrong with your car? Of course not.
It means the mechanic may not have the expertise needed to identify the problem.
Now imagine we’re not talking about your car. We’re talking about your health, or the health of someone you love.
And instead of a mechanic, we’re talking about a rheumatologist.
That’s where I believe an important conversation about Sjogren’s disease needs to begin.
Not Every Rheumatologist Has the Same Experience With Sjogren’s Disease
Let’s be clear. There are excellent rheumatologists who understand Sjogren’s disease, recognize its systemic complications, and take their patients seriously.
But not every rheumatologist has the same level of experience with Sjogren’s.
Rheumatology is a broad specialty. Physicians diagnose and manage rheumatoid arthritis, lupus, vasculitis, Sjogren’s disease, and numerous other autoimmune conditions.
Some rheumatologists have extensive experience treating lupus. Others may have particular expertise in inflammatory arthritis or complex systemic diseases.
And some have spent years studying and treating Sjogren’s, including its neurological, pulmonary, and other systemic manifestations.
They’re all rheumatologists, but their experience may be very different.
That’s why I believe greater exposure to Sjogren’s disease specialists and specialty centers is an important opportunity for improving patient care.
Not every rheumatologist needs to become a Sjogren’s expert. But those caring for patients with this disease should understand its potential complications and recognize when additional expertise is needed.
Sjogren’s Disease Is Not Just Dry Eyes and Dry Mouth
One of the most persistent misconceptions about Sjogren’s is that it’s primarily a dryness disease.
I’ve even heard it described as one of the better autoimmune diseases to have.
But that perception can be misleading.
Sjogren’s is a systemic autoimmune disease that can affect the nervous system, lungs, kidneys, skin, joints, eyes, and oral health.
For some people, complications include neuropathy, pulmonary disease, significant dental deterioration, or debilitating fatigue.
Others experience primarily glandular symptoms and never develop major organ involvement.
Both experiences are valid.
And while Sjogren’s is more commonly recognized in adults, children can develop the disease too. Childhood Sjogren’s may present differently, sometimes without the classic dryness symptoms, creating additional diagnostic challenges for families.
The problem arises when a physician’s understanding of Sjogren’s doesn’t extend beyond its most familiar symptoms.
A patient experiencing neurological symptoms or overwhelming fatigue deserves a thoughtful evaluation, even when those symptoms aren’t immediately explained by routine testing.
A disease doesn’t have to be life-threatening to be life-altering.
Why Do Some Patients and Families Feel Dismissed?
There isn’t one simple explanation.
Sometimes physicians have limited experience recognizing systemic Sjogren’s manifestations. Sometimes symptoms overlap with other conditions, making diagnosis difficult. And sometimes patients experience genuine dismissal.
These situations aren’t necessarily the same.
Consider someone with Sjogren’s who develops dizziness, burning sensations in their feet, heart palpitations, or unexplained weakness.
Those symptoms have several possible causes. They shouldn’t automatically be attributed to Sjogren’s, but they shouldn’t automatically be dismissed either.
Another challenge is negative bloodwork.
Some people with Sjogren’s don’t have the commonly associated SSA/Ro antibodies. Negative antibody testing alone does not rule out the disease, although further evaluation is needed to determine whether Sjogren’s or another condition explains the symptoms.
And classification criteria, which are primarily designed for research, are not a substitute for a complete clinical evaluation.
When these distinctions aren’t understood, patients may encounter unnecessary obstacles in their diagnostic journey.
For parents advocating for a child, those challenges can be especially frustrating when symptoms don’t fit the more familiar adult presentation of Sjogren’s.
How Do You Find a Rheumatologist Experienced in Sjogren’s Disease?
Unfortunately, this is where patients and families may have to do some research themselves.
And I recognize how difficult that can be when you’re already managing illness, caring for a loved one, or navigating multiple medical appointments.
Start by reviewing physician profiles, contacting rheumatology practices, and asking your healthcare team for recommendations.
When contacting a practice, consider asking:
- Does this rheumatologist regularly treat patients with Sjogren’s disease?
- Do they have experience evaluating systemic complications?
- Are they comfortable coordinating care with neurologists, pulmonologists, and other specialists?
- Do they evaluate patients with suspected Sjogren’s who have negative antibody testing?
If you’re seeking care for a child, ask specifically about pediatric Sjogren’s experience and whether the physician collaborates with pediatric specialists.
The person answering the phone may not know these answers. You may need to request clarification from the clinical team.
Can Social Media Help?
Absolutely, but use caution.
Social media has made it easier for patients and families to discover specialists, specialty centers, and others navigating similar health challenges.
Patient communities can be valuable starting points for finding physicians you might not otherwise know about.
But not everything shared online is accurate or helpful.
One person’s positive or negative experience with a physician doesn’t necessarily predict yours.
Use social media to gather possibilities, then verify credentials, clinical experience, and information through reputable medical institutions and direct conversations with healthcare practices.
And remember, a rheumatologist doesn’t necessarily need to work at a major specialty center to provide excellent care.
What matters is their knowledge, willingness to investigate concerns, and ability to recognize when additional expertise is needed.
What If You Still Don’t Feel Heard?
You shouldn’t have to become a medical expert to receive thoughtful care.
But preparing for appointments can help patients and caregivers communicate more effectively.
Describe how symptoms affect daily life, not simply what someone is experiencing.
For parents, that might mean explaining changes in a child’s energy, school attendance, activities, or ability to participate in everyday routines.
If your rheumatologist doesn’t believe a symptom is related to Sjogren’s, ask what other possibilities should be considered.
Ask whether additional evaluation or a referral is appropriate.
And if concerns remain unresolved, seeking a second opinion may be worthwhile.
Patient advocacy isn’t about proving a doctor wrong. It’s about working toward a clearer understanding of what’s happening and what should happen next.
Why I Became a Patient Advocate and Educator
My own experience navigating multiple autoimmune diseases has shown me how challenging healthcare can be, even with a supportive medical team.
I’ve recognized gaps in patient education, practical resources, and the support individuals and families need to navigate complex medical conditions.
Rather than simply talking about those gaps, I wanted to help fill them.
That’s why I began creating patient education and navigation resources.
Some grew directly out of strategies I’ve successfully used during my own medical journey. Others came from recurring questions and challenges I’ve encountered within the autoimmune community.
My goal isn’t to replace your healthcare team. It’s to help bridge the gap between patients, families, and physicians through education, preparation, and practical tools.
Because while we continue advocating for better Sjogren’s education within the medical community, patients and families need support today.
Whether you’re navigating Sjogren’s disease yourself, searching for answers for your child, or supporting someone you love, I’ve created resources to help you feel more informed and prepared.
Click the button below to explore my patient education and advocacy resources and find tools that may help you navigate your healthcare journey.
You and your loved ones deserve a healthcare team that takes your concerns seriously, recognizes the complexity of Sjogren’s disease, and works with you to find answers.