There you are, on the sidewalk outside your doctor’s office, a referral to rheumatologist in your hand, your doctor saying I think you may have rheumatoid arthritis ringing in your ears and somehow, the world is tilting a little. Nevermind possibly facing the rest of your life with a chronic illness, right now, you’re worried about the appointment with the rheumatologist. What can you expect? What can you do to prepare?
Every time you see a new doctor, they’ll take your medical history. If it’s even remotely complex - and if you’ve had symptoms for a while, your case might be - this is going to take a lot of time. Do yourself (and your doctors) a favor and write it all down. Create a file on your computer that can be easily updated and use point form - keep it as short as possible, no more than a couple of pages If you’re really organized, have a general medical history as well as one specific to whatever condition is being investigated, which can have more detailed description of symptoms, etc. Include a current list of medications and dosages, past medications that didn’t work, allergies, etc. If your doctor can put these documents in your file and take your medical history by following your document, this part of the appointment will be much faster and more organized, leaving more time for discussion.
Bring Your Test Results
If you’ve already had blood tests or x-rays, ask the referring doctor for a copy of the lab results and get a CD with your x-rays, CT or MRI scans. It’s possible that the rheumatologist will want to do their own tests, but bringing copies of what you have may prevent unnecessary duplication. You may also want to keep copies of these for your personal records.
Research, Research, Research
Do your homework before your appointment. Spend some time on the Internet or in the library getting information about the basics of RA. Understanding what may be happening and what the doctor is looking for when they examine you can make the appointment less stressful. Doing research will answer some of your questions and help you in creating a list of other questions to ask the doctor. Keep this list fairly concise - a first appointment with any new specialist will be pretty long and the focus tends to be for the doctor to collect as much information as possible to make an accurate diagnosis, which may not leave a lot of space for you. The more to the point you are in your questions, the better likelihood there is of you getting the answers you need. Bring a pen and paper so you can take notes.
Honesty Is the Best Policy
Be honest. We live in a culture that emphasizes soldiering through with a stiff upper lip, but this does you no favors when you see a doctor. Don’t minimize your experience or skip lightly over how much your symptoms impact your life - this is information the doctor needs, not just in making a diagnosis, but also in developing a treatment plan.
Paying attention is important in two different ways. First, listen closely to the questions the doctor asks and answer to the best of your ability - try to balance giving information with being concise.
Secondly, pay attention to the way the doctor acts and speaks to you to see whether this is someone you can work with. Not all doctors excel in interpersonal skills - some are dismissive, rude, make you feel rushed or don’t answer your questions. Before your appointment, read up on being a good advocate for yourself, which may help you bring an appointment back on track and will help you find out whether the doctor is a good team player. Finding a good rheumatologist is an important part of managing your RA.
Don’t Put All Your Eggs in One Basket
It’s an unfortunate reality that certain chronic illnesses like RA can be difficult to diagnose, especially in the beginning. It’s possible you may need to seek out at second opinion, or even a third. Trust your instinct - if the rheumatologist says you do not have RA, but you think they’re wrong, talk to your family doctor about another referral.
You can read more of Lene’s writing on The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.