Sjogren’s Syndrome

Talking to Your Doctor about Sjögren’s

Feeling comfortable and trusting your doctor are essential to successful patient-physician partnerships – and finding the right treatment plan for you to help manage symptoms of Sjögren’s syndrome. The tips below can help you establish a more productive dialogue with your doctor about your health so you can make sure you are effectively communicating your healthcare needs, particularly when it comes to your dryness symptoms.

Know When to Discuss Your Symptoms

Any time you notice changes to your health or body, tell your doctor. No symptom is too insignificant. One of the primary reasons Sjögren’s patients are not diagnosed earlier is that patients wait months (and sometime years!) before discussing their symptoms with their doctors. In fact, the average time from onset of symptoms to diagnosis is almost seven years.

Sjogren’s Syndrome

Want another reason to talk to your doctor? If left untreated, Sjögren’s symptoms such as dry eye and dry mouth can lead to more serious health complications, including increased risk for vision problems, dental cavities, yeast infections of the mouth (oral thrush), or inflammation of the major organs.

Get the Most Out of Your Visit

On average, healthcare providers spend approximately 10 minutes with patients per visit.That doesn’t leave a lot of time for small talk. Here are a few tips to help you maximize the time you spend with your doctor:

  • Make a list – Create a list of things you would like to discuss, ranked in order of importance. This way, if you only have time to discuss the first five items during this visit, at least you will have covered the most pressing issues.
  • Be prepared to explain your symptoms – Sometimes when the pressure is on, it can be difficult to explain your symptoms and how they impact your daily activities. However, it is important to give your doctor as much detail as possible so he or she can determine just how severe your symptoms may be. Don’t be shy about using graphic terms or phrases to describe your symptoms. Here are some examples of how other Sjögren’s patients describe it:

“I often gag when I eat because my mouth is so dry. I feel like there is glue in it.”
“My eyes are so dry that it feels like there is sand in them.”
“I drink a lot of liquids because of my dry mouth, but that also means that I am constantly running to the restroom”
“I wake up in the middle of the night because my mouth is so dry I feel like I’m choking.”

  • Come prepared with answers – Think ahead to the questions your doctor may ask so that you can have your answers ready. For instance, if you plan to discuss your dry-mouth symptoms, come prepared to describe your symptoms and answer questions such as:

When did the symptoms start?
How can you best characterize your symptoms?
How often do your experience the symptoms?
Are there times of the day when your symptoms are worse than other times?
Are your symptoms getting worse?
Do your symptoms affect your daily activities like eating, sleeping or interactions with friends, coworkers, family or your spouse?
How have you tried to relieve your symptoms (e.g. over-the-counter treatments, vitamins, drinking more fluids, etc.)?

  • Be honest – While you may exaggerate how much you exercise or how healthy your diet is when talking with friends, it is crucial that you answer your doctor’s questions honestly. The more accurate information you provide to your doctor, the more efficiently he or she can help you. Let your doctor know how the symptoms make you feel and how they impact your daily activities, your relationship, etc.
  • Ask questions – If you don’t understand what your doctor is saying, don’t be embarrassed to ask him or her to explain or use simpler terms. You can also ask him or her to speak more slowly. If your doctor wants to order tests, ask how those tests are administered and what the results may show.
  • Take notes – You can only follow your doctor’s advice if you remember it when you leave the office. Bring a small notebook and pen with you to jot down notes during your discussion with your doctor.
  • Confirm next steps – At the end of the visit, confirm next steps with your doctor. This means that you should be sure you understand any instructions, such as information on medicines; find out if you need to make any appointments for follow-up, additional screenings or blood work; ask how to get any test results.

Put a Spotlight on Your Symptoms

Sjögren’s syndrome can be difficult to diagnose because some symptoms are similar to those of menopause or allergies and other autoimmune conditions like lupus. Because all symptoms are not always present at the same time and can involve several body systems, doctors sometimes treat symptoms individually and do not recognize that a systemic disease is present. Additionally, doctors may want to focus on health conditions or symptoms that they believe are more serious or urgent.

To make sure that your symptoms get the attention they deserve:

  • Speak up – Take charge of your health by using your time with your doctor wisely and discussing the items most important to you. Do not rely on your doctor to bring up your symptoms.
  • Don’t accept “don’t worry about it” or “it will go away” as answers – Only you know how your symptoms affect you. If your doctor doesn’t address your symptoms the first time you bring them up, ask him or her about them in your next appointment. If your dry-eye or dry-mouth symptoms are affecting your daily activities and you cannot wait until your next appointment, don’t be afraid to demand answers. It is your body and you know it best.
  • Be prepared that your doctor may not have heard of Sjögren’s syndrome – Though more than four million people in the United States are affected by Sjögren’s, the syndrome is relatively unknown and is often undiagnosed or misdiagnosed. If you do not feel that your doctor can answer the questions you may have, ask him or her to refer you to a specialist, such as a rheumatologist, who may have more experience with the disorder.
  • Get a second opinion – If you do not agree with your doctor’s advice or diagnosis, get a second opinion. Your doctor will not be offended. Similarly, if you do not feel like your doctor is giving you the attention you need, you may want to consider a second opinion.

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