Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Sjogren’s and Preparing for a New Doctor Visit

Posted on Fri, Aug 31, 2012

 describe the imageWhen meeting a physician for the first time, it’s imperative to come prepared. Prior to my first visit, I write out my objectives for that appointment. My initial goals are often quite simple. Primarily, I want to determine if a successful working relationship with the practitioner can be achieved. Medical care of a chronic illness, in my opinion, is a journey that requires a trusting partnership. Unfortunately, many primary care physicians have had little experience with Sjögren’s. Therefore, it is part of my responsibility to provide them with updated information on our illness.

Listening carefully to answers to questions (such as the two listed below) will provide useful information for making this decision.

  • How many patients have you treated with Sjögren’s?
  • Are you interested in receiving professional educational information regarding Sjögren’s treatment, research and management?

If a practitioner is not open to learning about Sjögren’s, then I know immediately that this relationship isn’t a good fit. While this can be discouraging to realize, it is far more challenging to try to work with a physician who is not willing to learn about our complex syndrome.

Secondly, before an appointment, I gather three pieces of information:

  • Copies of my last few lab and test results.
  • A typed list of my current medications/supplements with dosages.
  • A typed list of significant medical conditions/ injuries with corresponding dates and treatments (the last two are kept as easily updated documents on my computer).

Providing my new practitioner with these lists helps expedite my appointment and serves as an indicator that I am serious about taking an active role in managing my health.

Depending on the situation, I also have brought a copy of The Sjögren’s Syndrome Handbook to give to the physician along with a copy of The Sjögren’s Quarterly which I offer to have sent to them. I explain that a great deal more has been learned about Sjögren’s in the last 5-10 years, including the fact that many patients experience more systemic disease involvement than previously understood (many doctors still only relate dry eyes and dry mouth with Sjögren’s). I also inform them that while significant medical ground has been gained, it still takes, on average, seven years to diagnose Sjögren’s. This is a mind-numbing statistic considering it is the second-most-common autoimmune disease, affecting nearly four million Americans.

Bringing a medical history binder to my appointments also has been extremely helpful. I use a large three-ring binder divided by medical specialty (including copies of office visit records), lab results, testing results, new treatment information, medication records, and notes. Because my binder is ridiculously thick, I keep it in my tote bag, out of sight, until I need to reference something. Several times I was able to provide missing lab results which provided the basis for immediate changes in treatment.

The last matter of business for my new doctor visit is the establishment of clear guidelines regarding medical management and communication procedures.

Understanding medical management means clarifying what things I will see this doctor for and what conditions will predicate a visit to a different member of my “medical team.” I also work with my practitioner to determine who will be the “chief navigator of my ship.” This may sound simple as I imagine it is widely understood that a rheumatologist would always function as a Sjögren’s patient’s main physician. However, depending on a number of factors, including insurance coverage, appointment availability, geography and perhaps even a practitioner’s interest in managing a patient with Sjögren’s, that  question can have a myriad of answers. I also discuss how various physicians communicate my care to one another, so that my main physician will have a complete picture of my health. Furthermore, understanding the new physician’s office procedures for sick or same-day visits, medication refills and how often I should be seen for follow-up care are good questions to have answered on your first visit.

Establishing a successful relationship with a physician is like establishing a relationship with a friend. It requires understanding, patience, effective communication and a sense of humor.

By Sara Sise, Sjögren’s patient and past Board of Directors Member

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