Beginner's Tips for Your Rheumatologist Visits
Over the past few years, my mom has dealt with a few chronic health conditions (she's actually in the process of determining if she has a form of AxSpA herself), and she's been in and out of the doctor's or physical therapy — weekly.
The thing is, she's a much better caregiver than a patient. After having worked most of her life as a nurse's assistant, a partner to sick men, and a hospice caregiver — providing a compassionate, loving journey toward the last days of life — it's funny to me that she struggles with self-advocacy when it comes to her own health issues.
I consistently have to remind her to stand up for herself in doctor's appointments; she gets overwhelmed and she forgets to mention things. The fact is, the trauma of being sick for so long can make it so hard. It can make you tired. It can make you feel like there's just so much to deal with. Sometimes, when you're dealing with especially cocky doctors who don't create a welcoming environment, you feel as though you have no right to speak up or ask questions or say no to a doctor's suggestion.
My rheumatologist appointment tips
These are the very ones I give to my mom. They come from my own AS patient experience, and from my experience as a health journalist.
Before your appointments — meaning the weeks leading up to it, it's important to write things down. Consider keeping a wellness notebook where you keep symptoms, sleep, diet, medication lists, and notes about your disease management experience (including your mental wellness!). What seems to work? What doesn't?
- Walk into your appointment with all of your symptoms written down. Which joints hurt? What is your fatigue like? How is your mobility? How is your emotional well-being? How often do you have trouble getting out of bed?
- Bring your medication list. You'll want to make sure you're bringing everything with you, as well as the days you take the medication and how you think the medication might be working. Be sure to jot down any questions, like "Is this medication affecting my sleep?" or "Could I need an increased dosage?"
- Exercise and movement notes. What is helping? What doesn't seem to help? Can the doctor recommend certain stretches, movements, or alternates to a movement that can help you find mobility? Do you not have an exercise regmen? This is the time to ask your doctor what they suggest.
- Mental wellness and quality of life. Long gone are the days when the body and mind were considered separate. It's important to let your doctor know how much your disease is affecting you. They might be able to help you make a plan for self-care, find a therapist, or connect you to a support group. Logging these issues can also help if you're making a case to apply for disability.
- Write all of your questions down, no matter how inane, silly, or simple they sound. You are paying your doctor for care and they have to answer you. These questions might be anything from, "How long until the medicine kicks in," "which foods should I cut out," "why am I in so much pain if my blood tests show no inflammation?" to "Are there any pillows that can help provide me with better sleep?" Maybe your rheumatologist has noted favorite pillows from other patients, or perhaps they've written a paper on a certain topic. It pays to ask.
- Bring support. Bring a friend or put a family member on speakerphone or FaceTime while you're in your appointment. Sometimes having someone else who knows your health story means they can fill in the gaps where you forget. It also helps to have someone take notes; often, when we are in the doctor's room we get so wrapped up in the anxiety that we forget what was said to us.
- Take notes! It's perfectly fine to take notes on paper or in an app while your doctor is speaking to you.
- If you do not understand something, ask for clarification. I cannot stress this enough. It is so easy to nod your head and pretend like you "get it" when you don't. It's scary to seem "dumb" or to admit your anxiety made it hard for you to follow the doctor's orders. But this is your life and your body. And you're allowed to advocate for yourself.
- Ask to document everything. If you request certain tests and your doctor denies you, ask them to record that they denied the testing. This can get a doctor to just run the tests since they don't want to note on file that they denied a request.
- Don't be afraid to ask for a second opinion. This can get tricky with insurance, but you don't have to accept your doctor's diagnosis. You're allowed to seek another perspective. I did this with my AS diagnosis, and even though I was diagnosed by two different rheumatologists, I wanted to be sure.
- If your intuition is telling you something, listen to it. Listen to your body. Speak up for what you feel.
Does reading AxSpA patient stories help you in your journey?