The Experience of Being a Patient with Rheumatoid Arthritis: It’s Complicated
Last year, RheumatoidArthritis.net completed its yearly survey, RA In America, and some of the results had people scratching their heads. It showed that 75 percent of people who responded to the survey feel comfortable talking to their healthcare provider about every aspect of their RA. This seems to be great news until you look at a few other answers.
Understanding the RA patient experience
When responding to specific questions about things like whether their healthcare provider has asked them about quality of life, or whether they feel like their healthcare provider communicated well with other members of their health-care team, only 50 percent said yes, and only 15 percent of people felt that their current treatment is working.
So, what gives? If we feel comfortable talking about everything, why aren’t we saying that our experience as a patient is a better one?
My personal experience as an RA patient
Before I asked anyone else their opinion, I thought about my own experience. My relationship with my doctors has always been shaped by my early experience as a kid when, from my perspective, my doctor held ultimate authority over my life. He asked the questions, made the treatment decisions, and we just did what he told us to do. This was before medicine and doctors were demystified by Google searches, and the God complex in medicine was an accepted norm.
However, my childhood rheumatologist took care of 98 percent of my health-care needs so my parents and I consulted him about every issue that I had. My experience with my childhood doctor was really positive.
Less time for needs that are not directly related to RA
As an adult, this has shifted for me as doctors have become more apt to refer out to specialists’ portions of my RA care and seem to have less time for my needs unless they are directly pertinent to RA. When I am sitting next to someone who is staring at a computer screen while asking me questions, I feel less comfortable opening up about the more difficult aspects of my life.
As patients, we have limited time with our doctors
I asked my friend Wendy to chime in and she had a few really interesting ideas and insights. “I think in a lot of cases, it is related to time - we get very little time with our rheumatologists at each appointment.”
She went on to say that even with improved information gathering through new patient forms that ask about function, “They never really talk to me about my poor functioning areas.” As far as communicating with other providers she said, “It always feels to me like each doc is in a silo and I’m the only one communicating with each one.”
Actual versus potential behavior
My friend Eduardo got right to the point. “I think it’s pretty simple,” he said. Imagine some random husband or wife being asked, “Are you comfortable talking with your spouse about anything?” Affirmative responses would be high. Then ask, “Do you actually talk with your spouse about important/deep topics.” And chances are the percentage would be lower.”
He went on to point out that the first question is more aspirational, and the subsequent questions more direct, asking about actual behavior instead of potential behavior.
Do we feel cared for by our doctors?
We all agree that treating rheumatoid arthritis is hard. No one expects miracles and, if they do, they quickly become disillusioned. How we interpret the quality of our care can have less to do with results and more to do with how cared for we feel. A responsive doctor and staff do wonders for my anxiety levels when things become challenging. Knowing that I can ask quality-of-life questions without my doctor's eyes glazing over eases my worry level even if I never do.
The RA patient experience is complicated
Bottom line, just like any relationship, it’s complicated, and communication is usually at the core of the issues that come up. It’s wonderful to feel comfortable enough to ask about anything; it’s another to put that into practice in the moment.
Maybe if we all get braver and start speaking up more about the details, the everyday issues that prevent us from living our best life, our doctors can do a better job at finding a treatment plan that works. And if health care providers prioritize listening instead of directing, it would be easier for us to do just that.
Any other ideas?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?