SELF ADVOCACY FOR DIAGNOSIS:
WORKING WITH PCPS
These strategies are geared toward working with PCPs and other non-rheumatology providers. You may find these tools helpful even if you end up with a diagnosis other than Sjogren's. Because current tests for Sjogren’s have limited accuracy, referral to an experienced rheumatologist is a crucial step. This section does not address self-advocacy with your rheumatologist, although many of the concepts will apply.
Tip: To prepare for your PCP visit, see Appointment Agenda Form.
Who initiates a Sjogren's evaluation?
PCPs, ophthalmologists, or dentists may recognize possible Sjogren’s and order preliminary lab tests. Unfortunately, they often do not consider the diagnosis even when patients have classic symptoms.
Non-rheumatology specialists (ENTs, neurologists, pulmonologists, and others) may refer patients for rheumatology for evaluation when Sjogren’s or other connective tissue diseases (CTDs) are suspected.
Rheumatologists may evaluate someone based on clinician referral, or occasionally patient self-referral. Patients and non-rheumatology providers often do not consider a rheumatology consult unless joint pain is a predominant feature.
Patients. Often frustrated by a lack clinician awareness and training, it is common to hear stories from patients who were diagnosed after they researched their symptoms and requested and evaluation for Sjogren's. Many doctors understandably object to patients using "Dr. Google" as a means to obtain a diagnosis. This is why patients need to share reliable sources such as the peer-reviewed literature and Clinical Practice Guidelines provided by Sjogren's Advocate and the Sjogren's Foundation. Utilizing key academic resources, not printing out webpages, is key to self-advocacy.
Who diagnoses Sjogren's?
While PCPs or others may order initial tests, a rheumatologist usually confirms the diagnosis. Even if Sjogren’s seems clearly evident, it is important to rule out mimics, overlapping conditions, and additional autoimmune diseases. Many Sjogren’s patients have more than one autoimmune disease.
Why is it important to diagnose Sjogren's?
Sjogren’s is a serious, systemic, often progressive disease that requires ongoing rheumatologic and other specialty care. Early diagnosis and treatment may reduce progression and complications.
What are common barriers to diagnosis?
In addition to the many barriers listed in Delayed Diagnosis, appointment time constraints and a shortage of rheumatologists (29) contribute to the challenge.
Misinformation about Sjogren’s diagnosis remains a problem. Some rheumatologists insist that Classification Criteria be fully met, even though a significant number of Sjogren's patients do not meet them. Some rheumatologists require a positive SSA before they will diagnose a patient, especially when minor salivary gland biopsy is not readily available. Because 30-40% of Sjogren's patients are SSA negative, this leaves many patients undiagnosed.
Making the most of your PCP visit
Prepare for your visit ahead of time
1. Appointment Agenda. Write a succinct medical history that focuses on your current problem. Circle 2-3 priorities that you want to address. Bring two copies to your visit.
2. Additional documents: If you are seeing a new provider, find out if you can email your Appointment agenda, Medication list, Current symptoms and health issues, and Past Medical History in advance whenever possible. Bring extra copies to the visit.
3. Current Medication List, including supplements and over the counter medications: Include doses, number of times/day. State drug allergies/ adverse reactions on the bottom.
4. Current symptoms and health issues:
List all active diseases and conditions. List all current symptoms even if you don't think they are important. Try to give timeline for each item: date started, or number of months or years since onset.
5. Past Medical History: Include dates or approximate age
Illnesses and other health conditions
Specialty visits: reason and outcome
Surgeries/ medical procedures
Family history: Major illnesses, especially rheumatologic disease
Women: pregnancy / birth history. Menstrual history, contraception, menopausal status
5. Family history: List major medical conditions, especially rheumatologic and autoimmune diseases in genetically related family members, particularly siblings, parents, grandparents and children.
TIP: It is helpful to keep a medication list on your computer. Update the list and save as a new document each time a change occurs.
Strategy during the visit
1. INTRO: In just a few sentences, state the MAIN reason for your visit
2. Share Appointment Agenda Discuss 2-3 priorities that you highlighted for today's visit. Be willing to listen to your clinician's ideas. They may have some very important concerns that you did not think of.
TIP: Give specific examples of how the illness impacts function. Don’t rely on vague descriptions of your symptoms such as “I’m tired all the time” or “everything hurts.” Include a time frame.
I can barely make it through a six hour workday. I need to lie down at lunch. I go straight home to bed, and get nothing else done that day. My diet is terrible- I have no energy to cook or shop. This has been going on for a year.
3. If you think you could have Sjogren’s, and the clinician seems unfamiliar with it, diplomatically suggest resources.
“I don’t know how much experience you have had with Sjogren’s patients. I’ve been doing a lot of research because I think I might have it. I found some wonderful resources that you may find interesting." Point out that a PCPs-STEPs to diagnosis page is available on this site.
A word of caution:
Be careful not to sound blaming or condescending if you think that you know more about Sjogren’s than they do. It is not the PCP's fault that Sjogren's was neglected in their training. Most PCPs are interested and open to learning about the disease.
4. Follow- up plan and communication. Ask about next steps, follow-up visits, and the preferred way to communicate with your clinician. Most Sjogren’s patients need multiple visits during the process of diagnosis.
Civility and mutual respect are essential for creating a collaborative relationship. Clinicians are humans too! Most people go into medicine because they want to help. They may not be familiar with your disease, or even be a highly skilled communicator, but treat them with respect and give them the benefit of the doubt.
Clinicians cannot possibly learn the details of more than 10,000 diseases. They rely on medical education programs to tell them what is important to know. Although Sjogren’s is a common, serious, multi-system disease, it continues to be neglected by medical education. The individual PCP who knows little about Sjogren's should not be blamed. They are almost always interested in learning.
Do not spend time complaining about negative experiences with other clinicians. If you are concerned that you carry a label of being difficult or psychosomatic, focus on saying you are hoping for a fresh look at your symptoms.
Examples of Collaborative statements:
“I’m hoping we can work together to get to the bottom of this.”
"Do you think you can help me figure out if this is Sjogren’s?”
Coping with Specific Challenges
Dealing with emotions during the visit
Many patients feel a double bind: strong emotions can lead to being labeled as psychogenic. On the other hand, a stoic approach may create the impression that you are not that sick.
Expression of certain strong emotional displays, particularly anger and hostility, can sabotage your visit and possibly your reputation as a patient.
It can help to practice your opening statement before you go into the appointment. If you tend to cry easily (even without tears), consider bringing a supportive ally into the room who can help communicate your concerns.
Many PCPs were taught that Sjogren’s is just a nuisance disease, all about dryness. If your provider seems unfamiliar with the serious and systemic nature of the disease, they may feel no sense of urgency regarding diagnosis. They may focus on conditions, such as depression or fibromyalgia, that they are more familiar with. The good news is that many PCPs are open to learning about Sjogren’s.
Sample responses if the clinician seems to be going off track
General- give specific examples of how your symptoms impact function.
“Do you think that___is important for my main problem?”
“I think more is going on here.”
“Yes, I could have fibromyalgia. I would also like to consider the possibility of Sjogren’s.”
Sample responses if you Sjogren's is not seen as serious
General: “Can you tell me about your experience with Sjogren’s patients?”
If you need to get their attention, you might say:
“Sjogren’s is now understood to be a systemic disease. Any organ system can be involved” or
“10 % of Sjogren’s patients die directly from their disease. That sounds serious to me” (24, 30). Share
See the Sjogren's Is More Than "Just Sicca" Handout and User Guide to learn more about countering the misperception that Sjogren's is a mild sicca disease.
WHEN YOU FEEL DERAILED BY PSYCHOLOGIZING COMMENTS OR BIASES
Sometimes in the face of uncertainty, clinicians will go to default explanations. Women, in particular, are likely to have their symptoms attributed to stress, depression, or anxiety. Menopause, obesity or fibromyalgia are often blamed for Sjogren’s symptoms.
Do not assume that the clinician is not well meaning. Implicit bias is often learned from peers and mentors in medical training. Female patients in particular should be prepared to respond to psychologizing statements. Have responses to anticipated biases ready to go.
Common Biases - Possible Responses
“I have been overweight for decades. This problem is new. I feel sick. I want help with that today.”
“I’m happy to discuss my weight at our next visit. Today I want to focus on my symptoms.”
If you are overweight/ obese, it may be helpful to take this article (157) to a PCP or rheumatologist that you are seeing for the first time. There is no association with obesity with the risk of developing Sjogren's!
Age bias (old) (What do you expect at your age?)
“Yes, a lot of people my age have pain. But this is new and associated with stiffness and overwhelming fatigue. I can no longer do___.”
“I know people feel more tired as they age. This is not normal tired. This is unrelenting, flu-like fatigue that does not respond to rest.”
Age bias (young)
“Young people get Sjogren's too. I think I might have Sjogren’s. Do you think that you can work with me to figure out what is going on? “
If they tell you Sjogren’s is a disease of older women: “Sjogren’s is often diagnosed decades after the first symptoms appear. Sjogren’s is probably not rare in young women, it is just rarely diagnosed in young women!"
More Gender bias/ response to psychological labels:
“No, I don’t feel stressed about the holidays. I’m here because I’m very sick and I need your help to figure out what is going on.”
“Yes, I’m menopausal. But I’m not just tired and dry. I can barely swallow, my eyes burn all of the time, and my fatigue feels like I have the flu every day. This is not normal!”
“Yes, I agree there is much to be said and agreed upon when it comes to the reciprocal effects of mental and physical illness, however, I know my own mind and body, and I am asking you to help me with these issues."
" Of course I'm stressed! That is a normal response to having an undiagnosed serious illness."