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Living With Sjögren’s

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Heal, Not Cure

Physicians who deal with chronic diseases are in the business of trying to heal when there is no cure.  Because of technical advances in the treatment of disease, people live longer and more productive lives, and they need to heal even when they cannot be cured.

We want to emphasize the healing nature of the doctor-patient relationship.  The good doctor, as we have heard again and again, is a person who can put himself in someone else's shoes, listens carefully, and makes you feel that it is possible to speak about whatever is on your mind.  A good doctor is an oasis in the experience of illness, a person with whom you can talk unreservedly and without hesitation or shame, a person who lightens the experience of living with a chronic disease.

Remember to always take an active role in your treatment.  Be sure to do the following:

  • Find the best physicians you can, the ones who feel "right" for you.  Keep looking even if this takes a while.
  • Remember that there must be a good fit between the parties involved if there is to be a good working relationship.
  • Talk to your physician about how to get in touch with him or her before there is an emergency, so you will know what to do.  Have a plan.  You may never need it, but it is a good feeling to know that it's there if you do.
  • Make sure your physician knows all relevant information.  When there are multiple medical problems, clear communication may take some organization on your part.
  • Get medical records and copies of past lab tests if you need them.  Ask for current lab results if you want them, so that you can keep your own medical records for reference.
  • Educate yourself about Sjögren's and any other conditions you may have.  Show your physician what you've been reading.  Ask questions that are relevant to your own physical situation.

Remember that Sjögren's is a disease that varies greatly among individuals.  Treatment will not be the same for everyone, although there are some standard treatments.  Treatment will vary depending on the nature of the disease, your age, your overall physical health, and what other conditions are present.  What your physician knows will allow him or her to create the best treatment plan possible, but no physician is infallible.  If it isn't working, don't hesitate to say so.

Good doctors exist.  There are physicians who will go the extra mile and who strive to preserve the humanity of the healing tradition.  They see their patient as whole people.  They may not be the first physicians you encounter, but they are out there.  The goal is to find them.

*article courtesy of "The Sjögren's Syndrome Survival Guide"

The Sjögren's Society of Canada can help you find a Sjögren's specialist in your area.  Reach out to our Head Office at info@sjogrenscanada.org or 888-558-0950.