In the spring of 2022, I was diagnosed with early-stage breast cancer. While I have a good prognosis, breast cancer adds to my already high disease burden and large amount of time spent interacting with the medical system.
Important Request: Please do not contact me to ask personal questions about my breast cancer or yours, and/or to ask for breast cancer information, advice and/or referrals.
Both Sjogren’s and breast cancer are common, serious diseases, impacting approximately 1 in 100 people*. Yet many people have never heard of Sjogren’s. In my experience teaching clinicians, I've encountered a surprising lack of awareness that Sjogren’s is a multisystem disease that can be life-threatening**.
I am sharing my story to highlight the disparities between the care I received for breast cancer vs. Sjogren’s. People with Sjogren’s deserve the same level of knowledge, compassion, and coordinated care that breast cancer patients are offered.
Until that happens, Sjogren’s Advocate offers tools and strategies to help you communicate with clinicians who may not be up-to-date. You will not find help like this anywhere else. It takes a huge investment of time, money, and most of my extremely limited energy to publish Sjogren’s Advocate. I will be asking for more and different support in the coming months so that I can continue this important work.
Everyone involved in my breast cancer care (clinicians, nurses, case managers, and more) has been highly knowledgeable and supportive. Unfortunately, people with Sjogren’s frequently struggle to find informed and engaged healthcare providers.
Unlike with Sjogren’s, I have had no need to advocate for care or educate anyone on my team about breast cancer. I have been offered consistent information, advice, and support that reflects current best practices.
There are no formal guidelines for monitoring systemic disease in Sjogren’s. Without a clear standard of practice, clinicians are left to decide on their own how to care for Sjogren’s patients. Systemic manifestations are often overlooked or diagnosed only after they have become obvious and/or severe.
The burden of educating healthcare professionals about Sjogren’s often unfairly falls on people with Sjogren’s.
The neglect of Sjogren’s is a system-wide problem. The disease is largely ignored by medical education programs, sending the message that Sjogren’s is unimportant. What little is taught provides inconsistent and even outdated information, reinforcing myths about Sjogren’s. Sjogren’s care often stops with sicca (dryness), even though systemic (non-sicca) manifestations can be found in almost every patient, if you look for them.
Getting diagnosed with breast cancer was timely, coordinated, and streamlined.
Breast cancer took 3 months to diagnose and stage, from the earliest signs of the disease. It took me 34 years of navigating the healthcare system, researching my symptoms, and advocating for myself before finally receiving a clear diagnosis of Sjogren’s. Learn more about how I finally got diagnosed.
Unlike with Sjogren’s, I do not have to advocate for or coordinate the monitoring and care of breast cancer myself.
My breast cancer care, including referrals and communication with other specialists, has been initiated and coordinated by case managers. Even though my type of breast cancer has only a 10-15% risk of causing more problems, I am monitored closely.
I do not need to remember when my next oncology appointment or mammogram is due because this happens automatically. From radiology and surgery to oncology and genetic counseling, my healthcare team seamlessly communicates, ensuring I receive up-to-date and comprehensive treatment. My questions and concerns are promptly addressed in a way that makes me feel confident about my care.
In stark contrast to my Sjogren's journey, my breast cancer diagnosis came with an abundance of social and psychological support from healthcare professionals, family, and friends.
Family and friends rallied around me, eager to know how I was doing and what cancer treatments the doctor recommended. They almost never ask me about Sjogren’s. Breast cancer is something people can understand, but Sjogren’s, like the evil villain Voldemort in the Harry Potter series, seems to be the disease that must not be named.
My breast cancer diagnosis prompted an outpouring of support from four of my specialists, who told me to let them know if they could help in any way. In contrast, I have needed to explain to my non-rheumatology doctors the challenges that come with Sjogren’s, including difficulty accessing care because of my inability to stand longer than 10-15 minutes because of POTS (a neurological manifestation of Sjogren’s) and extreme fatigue.
Unlike my experience with Sjogren’s, the seriousness of breast cancer is never downplayed. Two of the rheumatologists I saw early on told me that Sjogren’s is a mild dryness disease, and that diagnosis was not important because I would not need rheumatology care. One even commented, “Just be glad you don’t have lupus!”. These trivializing comments denied the devastating impact that Sjogren’s was having on my life. Fortunately, my current rheumatologist treats Sjogren’s as the serious systemic disease that it is.
Emotional support is integrated into breast cancer care. Because healthcare professionals view anxiety as a normal response to a major medical diagnosis such as breast cancer, every breast cancer case manager, nurse, and doctor has asked about how I am coping. I was offered referrals to counselors, social workers, and support groups. As I was filling out a routine anxiety screening tool while waiting for my surgery consultation, another newly diagnosed breast cancer patient walked in having a panic attack. The clinic manager led her to a private room, and gently reassured her that they were there to support her.
It is natural to be anxious about Sjogren’s just like it is natural to be anxious about breast cancer. Sjogren's is a complex disease that frequently results in a marked deterioration in patients' quality of life and function. Yet there is little acknowledgement of the high burden of disease, and no case managers to guide the way. The added difficulty of finding knowledgeable clinicians, the lack of coordinated care, and dismissive attitudes contribute to anxiety. Sjogren’s patients often hide emotional distress to avoid being psychologized. People with Sjogren’s deserve to have their emotional distress addressed with respect and dignity.
In a just world, Sjogren’s care would look like breast cancer care.
Primary care clinicians and rheumatologists are in short supply, pressed for time, and rarely have access to case managers or adequate administrative support. Comprehensive care is impeded by the persistent myth that Sjogren’s is an unimportant, nuisance, dryness disease. It is important to remember that it is not the clinicians’ fault medical education fails to educate them adequately or accurately about Sjogren’s. Efforts to update medical education and create multidisciplinary teams are essential to improving diagnosis, monitoring, and management.
I created Sjogren’s Advocate because suboptimal Sjogren’s diagnosis and care is the norm. Patients often need to learn detailed scientific information to effectively advocate for themselves. On Sjogren’s Advocate, I use my medical and scientific background to gather, curate, and share research findings and counter myths about Sjogren’s. Sjogren’s Advocate equips you with information, tools, and strategies so that you can use to advocate for timely diagnosis and proper care. The webpages, blog posts, and handouts you read are the product of hundreds of hours of work.
*Prevalence: “There are currently more than four million women with a history of breast cancer in the United States.” While this is slightly higher than the estimated 3-4 million with Sjogren’s (which does not go away) the breast cancer prevalence includes people like me with a history of breast cancer who currently have no signs or symptoms of the disease. In case you are wondering, people with Sjogren’s do not appear to be at overall increased risk of breast cancer (262).
**Mortality: This comparison pertains only to early-stage breast cancer. People with more advanced breast cancer experience far higher mortality than people with Sjogren’s. Most early-stage breast cancer patients and most Sjogren’s patients do not die directly from their disease. It is common knowledge that early breast cancer occasionally leads to death; most clinicians don’t know that about 1 in 10 Sjogren’s patients eventually die from systemic manifestations of the disease (24). With both diseases, patients have better outcomes with ongoing monitoring and management. Learn more about Sjogren’s mortality.
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