Updated on November 17, 2023.
Healthcare provider (HCP) appointments are a fact of life for people living with rheumatoid arthritis (RA). They’re the best time to tell your HCP how you’re feeling, whether you think your treatment is working, and about concerns you may have with your symptoms.
If it seems like those questions, concerns, and complaints are not being heard, you may feel frustrated or discouraged. And research suggests that many people with RA experience this frustration.
What research suggests
In a 2020 review published in PLOS One, researchers examined the differences between the perspectives of HCPs and people with immune-mediated inflammatory diseases like RA. Overall, they saw a clear gap when it came to the perception of how much pain or fatigue the person was experiencing. Many people consistently felt their condition to be worse, with more debilitating symptoms, than their HCP did. Often, they disagreed with HCPs about their remission status, as well.
People with RA also frequently reported they:
- Felt misunderstood
- Felt their HCP’s assessments had limitations
- Disagreed with HCP findings
- Weren’t listened to well enough by their HCP
- Felt unempowered
The study authors pointed out that there isn’t an objective way to measure the severity of RA, unlike diseases such as diabetes or hypertension. That means subjective measurements, like the patient’s own description of pain, should be weighed more heavily.
Don’t be afraid to speak up
A breakdown in communication between you and your HCP can affect treatment, and in turn, disease progression. Even chances of remission can be influenced by gaps in understanding.
That’s why it’s critical for HCPs to focus, listen, and take the time to understand your perspective—and why it’s critical for you to speak up if you’re unhappy with your care. If you feel your HCP doesn’t listen, isn’t empathetic to your concerns, or seems to rush through appointments, try these smart strategies.
Become an expert on how your RA affects you. Keep a health journal to document your illness from day to day. Track symptoms and take notes about how you respond to medication. You can also write down any triggers you’ve noticed for pain or inflammation.
Prepare before you go. Go into your appointment ready to discuss questions or concerns—and bring that health journal with you. Creating a short list of topics you’d like to cover can help make sure you don’t forget anything. This preparation will help optimize the time you get with the HCP, and help you become clearer about what you need to know.
Take notes and ask the provider to clarify anything you don’t understand. With your provider’s consent, you may even want to make an audio recording of the conversation. It’s important that you both understand and remember your treatment options, medications, and other aspects of your RA.
Repeat the provider’s instructions in your own words. To make sure you understood the HCP correctly, try reading your notes back to them. This creates the opportunity to correct misunderstandings, or to communicate a concept more clearly.
Finally, before you leave, find out the best way to contact your provider. This can help improve communication in between visits. Understand you may be directed to a nurse or practice manager, who should be able to handle important concerns.
