Making Yourself Heard When You Have RA

Making Yourself Heard When You Have RA

Doctor’s appointments are a fact of life for people living with rheumatoid arthritis (RA) – so you have to make them count. They’re the best time to tell your physician how you’re feeling, whether or not you think your treatment is working and any other concerns you may be having about your symptoms.

It’s no wonder then how frustrated (or downright discouraged) you probably feel when it seems like those questions, concerns and complaints are falling on deaf ears.

And unfortunately, research suggests than many RA sufferers are experiencing this same frustration.

Doctors’ Appointments Leave Many Feeling Unheard
In one small study presented at an American College of Rheumatology annual meeting, researchers interviewed twenty people aged 38 to 85 who had been diagnosed with RA, and who viewed their RA as much worse than their doctor did. The interviews revealed that many of the RA patients felt that their doctors weren’t listening to them, weren’t empathetic to their concerns and that they rushed through appointments.

A larger study by the American Autoimmune Disease Related Disease Association (AARDA) looked at over 7,800 men and women with autoimmune conditions such as rheumatoid arthritis and psoriatic arthritis. Ninety-eight percent of people in the study reported having fatigue, with 89% saying it was a “major issue,” and 68% saying it interfered with their day-to-day tasks. In fact, the study found that fatigue impacted nearly every aspect of their lives.

Despite this overwhelming mental and physical toll, though, 59% said their doctors didn’t prescribe them any medication or recommend any other treatments.

Don’t Be Afraid to Speak Up
Both studies shine a spotlight on the frustration that many people living with RA and other autoimmune conditions feel when trying to talk to their doctor. And over time, this breakdown in communication can negatively affect the treatment and management of your RA. That’s why it’s critical for you to speak up when you aren’t happy with your care.

To get the most out of your doctor visits, and get some additional peace of mind, try these strategies:

  • Become an expert on how your RA affects you. Keeping a health journal is a great way to do this. You can track your symptoms and make notes about whether or not you feel like you’re responding 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 any questions or concerns you may have – and bring that journal. This will help optimize the time you get with the doctor, and help you become clearer about what you need to know.
  • Take notes, and ask the doctor to clarify anything you don’t understand. It’s important that you understand your treatment options, medications and other aspects of your RA. If you’re confused about anything, don’t be afraid to speak up and ask the doctor to clarify it for you.  
  • Before you leave, find out the best way to contact your physician. This can help improve communication in between doctor visits. You may be directed to a nurse or practice manager, but this is much better than being in left in the dark about an important concern.

For more tips, check out the Rheumatoid Arthritis Doctor Visit Guide.

Medically reviewed in June 2019.

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