The One Thing Missing From Your Sjögren’s Care Plan (And It’s Not Another Supplement)

When it comes to managing Sjögren’s—or even suspecting you have it—you’ve likely heard the usual advice: tweak your diet, adjust your lifestyle, add supplements, and follow your medication plan. And yes, those things are important, but they’re not the whole picture.

As someone who’s lived this life and spends her days immersed in Sjögren’s support groups and advocacy work, I see a glaring gap in care plans everywhere: self-advocacy.

And no, I don’t just mean summoning the courage to call out a dismissive doctor (though, trust me, that skill is crucial). Self-advocacy is a three-pronged approach in my book: education, awareness, and a forward-looking strategy. This can transform how you navigate this disease. Let me break it down:

1. Education: Know Your Sources

Raise your hand if you’ve ever fallen into the Google rabbit hole and emerged with more questions than answers. Guilty. Research is vital, but knowing where to look is half the battle. For example, articles on NIH or PubMed are goldmines of trustworthy, peer-reviewed information. On the flip side, relying on websites like Medical News Today or Reddit might leave you with outdated, oversimplified, or downright wrong info and advice.

Self-advocacy starts with educating yourself through credible sources. Because the more you know, the better equipped you are to ask informed questions and demand better answers.

2. Awareness: Accepting the Whole Picture

Living with Sjögren’s means acknowledging the messy, complicated reality of the disease. It’s more than just dry eyes and fatigue; it’s a web of interconnected symptoms that demand attention. Awareness is about fully understanding the breadth of the condition and, yes, accepting it (even the parts that scare you).

This step is key because it helps you articulate your experience to doctors, loved ones, and even yourself. Owning every piece of the puzzle builds a stronger foundation for finding solutions.

3. Forward-Looking: Establish a Plan

Here’s the thing about healthcare: you can’t leave it to chance. Don’t blinding trust the system, lay the groundwork, and always, always ensure there’s a plan in place.

Here are a couple examples:

1. Don’t walk out of a doctor’s appointment without an agreed-upon next step. Did they order an CT scan? How should you expect the results? How does the provider want to review the results together (ex: a follow-up appointment)? Discuss and clarify future steps.
2. Don’t assume your primary care physician is referring you to a rheumatologist who actually understands Sjögren’s. In the past, my request for a rheumatology referral sounded like this, “Please refer me to Dr. Smith in Lovelytown for the evaluation and treatment of Sjogren’s.” I leave nothing to chance.

It is less about perfection and more about being proactive. And yes, I know how hard that feels when you’re sick and exhausted. Write things down to tackle another day, and enjoy a break when you need it.

Too Overwhelmed to Start? I Get It.

I’ve been there—too tired to string two thoughts together, let alone research my condition or stand my ground in an appointment. Those early years of my autoimmune journey were a haze of trial and error. That’s why I became a board certified patient advocate: to help others who feel like they’re drowning in the system.

If the idea of mastering education, awareness, and forward-looking feels like climbing Everest, you don’t have to go it alone. Let me help you advocate for the care you deserve—because you’re worth it, and so is your health.

Want more tips on how to navigate a path to a Sjogren’s diagnosis and treatment? Watch my free introductory video (comes with a free Sjogren’s symptom checklist!). This video is a preview to my 2.5 hour masterclass on Sjogren’s. Get more details here.