What I Wish My Doctor Told Me About RA
I spent years living with rheumatoid arthritis (RA) before I was correctly diagnosed.
I remember asking every provider I saw about the relentless pain I felt in my joints. The swelling and stiffness I struggled with. The fatigue that plagued me all day every day.
When I finally learned that these symptoms had a name, rheumatoid arthritis, I thought I'd be home free.
What my doctors should've said to me
I thought that having a diagnosis meant having a treatment plan and having a treatment plan meant being resolved from the things that caused me such discomfort on a daily basis.
I don't want to be bleak here - being on a consistent treatment plan has brought me a significant amount of relief and reduction in my symptoms. But, it hasn't erased RA from my life.
I often think about what my doctors could've said to me, in the chapter of my life before the RA diagnosis or in the years since, that could've better prepared me for this life that I live. I wonder which of the things I've learned on the internet, from this community, and from other RA patients that I could've been aware and understanding of before I had to go searching for them.
How can medical professionals better support patients?
Simply put, I wonder how I can help medical professionals to better educate patients on a path to RA diagnosis or newly diagnosed with RA. Here's where I'd have them start.
Validate the patient's experience
As a doctor treating someone who presents with regular joint pain, I'd start by validating the patient's experience. If they've made the effort of finding you, scheduling an appointment with you, waiting for that appointment, and showing up in your office or on your screen, they are probably significantly bothered by the pain they're feeling.
Listen to them. Think about their whole life, and their whole health - not just the symptoms they're showing up with. Never question them, or make them doubt themselves, or tell them that their pain can't be as bad as they're experiencing because, frankly, it can only be compared for them against other pain they've felt before.
Offer tests that help the diagnostic process
Next, offer them every test you think could help your diagnostic process. Cut down on the journey to correct diagnosis by doing as much as possible upfront (obviously, insurance and logistics notwithstanding).
In the interim, try asking if there's something you can prescribe or offer to help them manage their pain in the short term (as long as it doesn't mask or interrupt the diagnostic process).
Consistent communication and collaboration
Once you know your patient has RA, I think the most important thing to tell them is that every day can be different.
When living with RA, your best days will vary and your worse days will too - you'll learn to experience things in gradients and not just black and white. New symptoms or increases in symptoms can come seemingly out of the blue. It can be scary, overwhelming, and frustrating, but it's "normal" for this disease.
The patient-doctor relationship should be one of consistent communication and collaboration, much like a team, and it's imperative that health care professionals communicate this to patients both at the onset of diagnosis and throughout the relationship.
Stay current on research and new treatment options
Finally, remind them that in a world where medicine and science are constantly advancing, there is always an opportunity for new treatment options, new pain management procedures, new clinical trials, new medication, and device developments.
And, as their doctor, you will do your best to keep them apprised of what you're learning, but you're more than open to them bringing things to your attention as well.
This collaboration, this sense of teamwork - it's really pivotal in making patients feel supported and well able to manage their rheumatoid arthritis.
What lifestyle changes have you found to be most helpful in managing your RA?
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