From Despair To Hope And Beyond
Sjogren’s disease is largely invisible.
When left undiagnosed and unmanaged, Sjogren’s disease can cause irreversible damage that is disabling and debilitating. This is why getting diagnosed and monitoring Sjogren’s disease is extremely important.
When I joined the Sjogren’s community 7 years ago, Sjogren’s disease was downplayed as a mild dryness syndrome, instead of the serious systemic disease it is. To speak of the reality of Sjogren’s outside of patient-only groups was to open yourself to ridicule, hurt, and neglect. When I described the reality of Sjogren’s to people who didn’t have Sjogren’s, I was told to “gut it out” and “grow a thicker skin”, because I was “too sensitive”, “too dramatic”, “prone to anxiety and depression”, and accused of creating my own pain. I lacked the vocabulary to describe my lived experience and I had no data to back it up. To make matters much, much worse, major medical institutions publishing on Sjogren’s disease grossly mischaracterized it and continue to do so to this day.
Our community was neglected and felt neglected. Seven years ago, anger and despair at the systemic individual injustices we faced were prominent emotions in all of the Sjogren’s patient groups I joined, both online and in person.
July 23 is World Sjogren’s Day.
The Sjogren’s Foundation says that World Sjogren's Day is, “meant to put a face on the millions of people who live with this disease or suffer from symptoms and have yet to be diagnosed”. This year the Sjogren’s Foundation is asking community members to make a pledge for World Sjögren’s Day in honor of yourself or somebody who has made an impact on your Sjogren’s journey.
I pledged in honor of all the people I know who are disabled, impoverished, isolated, and/or abused because of the lack of awareness of, and care and support for, Sjogren’s disease (and there are many). I’ve been appalled at how easily these people with Sjogren’s fall through the cracks in the system.
When I first started raising awareness and advocating for Sjogren’s, I felt like it was a lost cause that fell on deaf ears.
I persisted because, whether I like it or not, I have to live with Sjogren’s disease and living in despair is not living. Now, thanks to the collective efforts of institutions, researchers, clinicians, and Sjogren’s patients, in particular Dr. Sarah Schafer, hope is on the horizon.
Dr. Schafer is a medical doctor living with Sjogren’s disease. She has painstakingly gathered and synthesized research evidence about the reality of Sjogren’s disease. She’s generously shared her findings with the American College of Rheumatology, the Sjogren’s Foundation, and primary care physicians in the hopes that this would effect changes in Sjogren’s care from the top down. After making little headway with institutions, experts, and medical education programs, she courageously published her findings on www.sjogrensadvocate.com so that individual patients could advocate for themselves. In doing so she validated our lived experiences and empowered us with language to describe them and the data to back them up and advocate for care. Sjogren’s Advocate became a valuable resource for the global Sjogren’s community, giving many of us the confidence to speak up and advocate for ourselves and each other, and created positive change and momentum. There’s power in numbers and our collective advocacy for Sjogren’s has provided us with hope.
And though few of us can do what Dr. Schafer has done, there are plenty of other ways to make a difference. I’ll be giving a talk titled, “Networking and Advocacy, Making a Difference Together” at the 4th Annual Virtual Sjogren’s Summit, happening online from July 17-19, 2025.
This year’s theme is "Building Your Sjogren's Network” and it’s dedicated to providing Sjogren's patients, caregivers, and healthcare professionals with the practical knowledge, actionable strategies, and powerful sense of community needed to navigate this complex condition. This summit is more than just a series of talks; it’s an opportunity to connect, learn, and feel understood. Whether you're newly diagnosed or have been on this journey for years, you will walk away with new tools and a stronger support system. The event is hosted by Dr. Kara Wada, an immunologist living with Sjogren’s disease who is also a member of the Hidden Illness and Disability Directory of Entrepreneurs and Nurturers (HIDDEN). To ensure that everyone has access, regardless of their ability to pay, the summit is free to attend. Free replays will be available July 26-27. There is also an all-access pass that allows you to watch the summit whenever you'd like. To register, please visit www.sjogrenssummit.com.
Two other members of HIDDEN, Dr. Schafer and Kristina Kelly, will be speaking at the Summit, too. Kristina Kelly is a board-certified patient advocate and author of the highly entertaining and incredibly useful book, "How To Be A Badass In A Broken Healthcare System". It is a great gift.
Kristina Kelly, in consultation with Dr. Schafer, just released a powerful, self-paced, 6-module course called “Streamlining Sjogren’s” that addresses roadblocks to diagnosis and care.
The course features the uniquely powerful combination of Dr. Schafer’s in-depth Sjogren’s knowledge and Kristina’s expertise as a Board-Certified Patient Advocate. Together, they provide strategies to help you navigate a healthcare system that often pushes back. The course is designed to save you energy and help move you forward when you are not getting your needs met, both during and after diagnosis. You’ll also learn what you can do if you feel frustrated, unseen, overwhelmed, or angry during your appointments. Check out a 15-minute preview of the course on www.littleenginepatientadvocacy.com.
When I was diagnosed with Sjogren’s, it was hard to imagine a future filled with joy, love, and peace.
I was full of despair and, in the face of neglect, dismissal, and disbelief, it was hard to have hope. But hope is what has kept me going and hope is what has gotten me and the Sjogren’s community to where we are today. Seven years on, we are a more connected and supportive community and we’ve created accessible resources for each other. We had to, as individuals, be courageous enough to speak out against the system, risking dismissal, neglect, isolation, and abuse. And because enough of us did, collectively, change has arrived.
A version of this blog post is published in my local newspaper, The Davis Enterprise.
