‘Culturally competent care’ isn’t just a buzzword.
It’s a very real quality of healthcare, and many minority and marginalized patient populations continue to lack it. For Black people living with Sjögren’s disease or Sjögren’s syndrome, the issue of cultural competence becomes even more important.
After all, Sjögren’s symptoms go far beyond merely dry eyes and mouth. And even when symptoms are limited, many patients would rather quietly endure burning eyes, blurred vision, and difficulty swallowing food than go to a doctor where they feel disrespected and misunderstood.
In Black women, especially, who are diagnosed at a rate of 6:1 for every Black male, cultural biases can make it even worse. The “strong Black woman” trope – while useful in many areas of life – may actually make Sjögren’s syndrome that much more debilitating.
The good news? Your next doctor visit can be a turning point if you come prepared with the right questions. Based on 2025 updates from the American College of Rheumatology (ACR) and the British Society for Rheumatology (BSR), patient-centered care is now getting the full attention it deserves.
Ready to conquer your next doctor visit and finally get the care that changes everything?
It’s time to gear up.
Let’s discuss the concrete, science-backed questions that make all the difference…
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Tears. Saliva. Stimulants. Medications.
Four words, four topics, four areas of your condition that absolutely need to be explored. To begin, start with the basics. Bring up your most bothersome dryness symptoms, and go from there. Generally speaking, the guidelines stress starting with topical therapies before moving to systemic drugs.
Here are some questions to have ready to go:
These aren’t just questions that sound good, either. Leading guidelines recommend regular preservative-free lubricating eye drops, as many as three times per hour. Saliva substitutes are also suggested for symptomatic relief.
Because many Sjögren’s patients have both tear deficiency and gland issues, combining drops with warm compresses can improve both. For oral dryness, meanwhile, 5 mg of the medication pilocarpine three to four times daily can help with gland function.
Best of all, these daily measures may prevent complications like corneal damage or dental decay, which become serious issues if proper care is delayed.
Sometimes, your dryness may be under control, but you still don’t feel good. If you’re absolutely exhausted, experience joint pain, have kidney dysfunction, struggle with nerve pain, or endure other unrelenting symptoms, it’s time to consider further options.
Remember, Sjögren’s is not just a “dryness disease”— it’s an autoimmune disease. That means it can impact many parts of your body, even those you wouldn’t consider related.
In cases like this, be direct with your doctor. Ask questions like:
According to the American College of Rheumatology (ACR), first-line options like gabapentin, pregabalin, and SNRIs are all indicated for neuropathic pain. Meanwhile, the British Society for Rheumatology (BSR) advises limiting glucocorticoids to short courses and using rituximab if you develop a severe refractory systemic disease.
But don’t worry about all these drug names and conditions, and what exactly they mean. Just take note, keep them in your back pocket, and have your questions ready to fire. It’s good to be informed, but obviously, you’re not an expert in these fields. Your job, as a self-aware patient, is simply to know of different options. From there, your team of doctors can guide you toward the right course of treatment.
Not to mention, they’ll be impressed that you did your homework!
RELATED: 4 Tips For Keeping Your Sjogren’s Under Control
Speaking of homework, it doesn’t take a lot of studying to know what bothers you most. After all, you’re the one living with it, day in and day out, so it should be no problem telling your doctor(s) what you feel.
For most people with Sjögren’s, especially Black patients, fatigue and pain are often the biggest daily burdens. Sadly, they’re also frequently the most under-addressed. Studies consistently show they are stronger predictors of poor quality of life than chronic dryness symptoms alone.
When speaking with healthcare professionals, use clear, specific language:
Need some help with preparing the right questions? Bringing a simple symptom log (e.g., rating fatigue and pain daily) can certainly help. This will give your doctor(s) a full picture so they can consider additional therapies, treatments, and lifestyle adjustments.
The more data, the better!
The best news yet?
New options for Sjögren’s are emerging fast, and asking about them shows you’re proactive. In fact, 2025 brought exciting Phase III results for drugs like ianalumab (Novartis), which showed a statistically significant reduction in disease activity. Other medications, like Telitacicept, also showed strong results in their Phase III trial, with significant improvements in scores on the EULAR Sjögren’s Syndrome Disease Activity Index (ESSDAI).
So stay informed!
Questions you can ask include things like:
If you’re feeling particularly adventurous, you can even participate in trials. This would give you early access while also helping to advance knowledge and care for your community. The Sjögren’s Foundation openly encourages discussing trials, especially since Black patients have historically been underrepresented in such research.
At the end of the day, these questions work for various reasons. First and foremost, they shift your doctor visit from a passive listening session to an active partnership. You may not have gone to medical school or have a practice, but it’s your body, your mind, heart, and soul on the line here.
By showing how much you care, how much you’re willing to learn and fight for your health, you’re making all the right moves.
Not to mention, it addresses long-standing cultural biases. For Black patients, this matters deeply. Whether you’re a woman navigating perimenopause or a man managing overlapping heart risks, these conversations honor your lived experience.
It’s all about equitable, effective care.
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