Autoimmune

The Autoimmune Disease Most Doctors Aren’t Looking For

And why it takes an average of five years to diagnose

The Autoimmune Disease Most Doctors Aren’t Looking For

For anyone who has been told their dryness, fatigue, and joint pain are just aging, and sensed there was something more to the story.

You’ve probably been told it’s stress. Or perimenopause. Or just getting older.

But if you wake up at night reaching for water, spend your mornings with eyes that feel like sandpaper, and carry a fatigue that no amount of sleep seems to fix, those symptoms aren’t separate problems. They are one condition. And most doctors aren’t connecting them.

It’s called Sjögren’s disease, and it is the second most common autoimmune rheumatic disease in the world. Over 90% of those diagnosed are women [1]. Most of them waited years to get a name for what they were experiencing, because each symptom was routed to a different specialist and nobody looked at the whole picture.

One detail that surprises many people: up to 22% of Sjögren’s patients have co-existing thyroid disease [1]. If you’ve been managing a thyroid condition, whether Hashimoto’s or another thyroid diagnosis, and you still don’t feel right despite treatment, there may be a reason your doctors haven’t found yet. Sjögren’s is frequently the missing piece.

The diagnostic delay is significant. Patients routinely wait years, sometimes more than a decade, between their first symptoms and a formal diagnosis [2]. In that time they collect referrals: to ophthalmology for dry eyes, to dentistry for cavities that keep returning, to rheumatology for joint pain that doesn’t fit a pattern, to psychiatry for fatigue and depression. Each specialist treats their piece. Nobody looks at the whole picture.

This article is about what that picture actually looks like, and what to do when you recognize yourself in it.

This is the opening of a longer article.

The full piece — the mechanisms, the labs to ask for, and what to do about it — is free to read on our newsletter.

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Sources & Research

Every claim in this article is grounded in peer-reviewed research. DOI links open the original studies.

  1. Price EJ, Benjamin S, Bombardieri M, et al. British Society for Rheumatology guideline on management of adult and juvenile onset Sjögren disease. Rheumatology (Oxford). 2025;64(2):409–439. doi:10.1093/rheumatology/keae152 (Published online April 2024; print issue February 2025.)

  2. Meinecke A, Kreis K, Olson P, et al. Impact of time to diagnosis in patients with primary Sjögren’s syndrome: a cross-sectional study. Clinical and Experimental Rheumatology. 2024;42(12):2444–2452. doi:10.55563/clinexprheumatol/karr2a

  3. Epitropoulos AT, Donnenfeld ED, Shah ZA, et al. Effect of oral re-esterified omega-3 nutritional supplementation on dry eyes. Cornea. 2016;35(9):1185–1191. doi:10.1097/ICO.0000000000000940

  4. Asbell PA, Maguire MG, Pistilli M, et al.; Dry Eye Assessment and Management Study Research Group. n-3 fatty acid supplementation for the treatment of dry eye disease. New England Journal of Medicine. 2018;378(18):1681–1690. doi:10.1056/NEJMoa1709691

  5. Gergianaki I, Fanouriakis A, Repa A, et al. Vitamin D and Sjögren’s disease: revealing the connections — a systematic review and meta-analysis. Nutrients. 2023;15(3):497. doi:10.3390/nu15030497

  6. Agmon-Levin N, Kivity S, Tzioufas AG, et al. Low levels of vitamin D are associated with neuropathy and lymphoma among patients with Sjögren’s syndrome. Journal of Autoimmunity. 2012;39(3):234–239. doi:10.1016/j.jaut.2012.05.018

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