This just doesn’t happen:
You take the car to a mechanic and he looks out the window across the showroom and says, “Your car looks fine to me. The paint is still shiny. It’s not very old.”
All of our cars are pretty old so the guys at the local Firestone shop know us pretty well. Over the past few years, we’ve been in a dozen times for three cars, but never have I been told, “Kelly, don’t let those brake pads worry you.”
No. They listen carefully to the “complaints,” and then look inside, behind, and underneath this-and-that until they find the reason for the problem. They run tests, look in books, and even test-drive my car until they know what to do.
Your hands don’t look too bad
Recently I called a repairman for my refrigerator. Can you even picture him refusing to look for the problem? No.
Imagine if I said, “The fridge won’t make ice,” and he said, “But it’s so clean.”
Imagine me asking, “Why isn’t it cold in there?” and him answering, “Ma’am it looks good and it’s full of groceries – I don’t know what you’re complaining about.”
It just wouldn’t happen.
Unless maybe you were a person with Rheumatoid Disease (PRD) who went to a doctor and he didn’t think your hands looked swollen.
The appliance repairman gets out his thermometer to take the temperature inside my freezer. He takes my claim of “no ice” at face value, and starts to look for the cause. (Side note: why doesn’t the rheumatologist have a thermometer to measure my fevers?)
Think about it. Who would pay the high cost of a repairman if the ice were fine? Who wants to waste half a day waiting? And then have a stranger in her kitchen? Unless there really is an ice problem.
Going to the doctor costs as much time and money. And you bare your private concerns, the pains you endure bravely, and the sudden disability that frightens your loved ones because you’re so strong…
I’ve never met anyone who would go through that for any other reason than to try to get help and relief.
But too often, a patient’s “complaints” are met with comments like “Your hands don’t look bad,” “At least you can still put your arms over your head,” or “You’re too young.” (Or worse.)
Knees are worth more than break pads. And what’s going on in my neck is as important as the belts in my truck.
It feels silly to compare medical care to mechanical care, but this analogy has nagged me for years. It makes me cry when I say it out loud. Who would judge a car’s problems by what it looks like sitting in a parking space? People deserve as much effort and investigation.Who judges a car’s problems by what it looks like in a parking space? People deserve as much effort & investigation Click To Tweet
Lighting a candle (instead of cursing the darkness)
I realize dismissiveness or inadequate disease treatment is not part of the experience of every PRD. But of the thousands of patients I’ve heard from, it’s a large part. Most of the time, patients try again and eventually find a doctor who treats them appropriately. If a doctor has been dismissive of your symptoms, don’t give up. Yes, it’s frustrating, and sometimes even humiliating to take that chance. But don’t give up. It’s clear that better care is out there.
It’s a watershed time in rheumatology, and experts are aware of it.
1) Studies are showing “substantial numbers of RA patients with active disease did not receive care consistent with the current ACR treatment recommendations. Innovative approaches to improve care are necessary.”
2) The American College of Rheumatology (ACR) has suggested there is “considerable room for improvement in the quality of rheumatic care delivered to the US population and provide a clear call to improve health care for patients with arthritis and allied conditions.”
3) Suboptimal care in Rheumatoid Arthritis has been documented by several studies that suggest “at worst, significant deficits in quality of care for RA exist in the healthcare system, and that at best, more systematic assessment of quality in this condition is warranted.”3 #rheum studies show it’s a watershed time in rheumatology, and experts are aware of it. Click To Tweet
WHAT YOU CAN DO
1) If you don’t feel empowered to find good care, read good books like The Empowered Patient by Elizabeth Cohen or e-Patient Dave deBronkart’s new book Let Patients Help! A patient engagement handbook and others we’ll be previewing here on RAW in the coming weeks.
2) Find a friend or family member to partner with and encourage each other to get the level of care you need.
3) If you have a fantastic doctor for RD, please consider sharing the name on the comments page. You don’t need to use your own name if you don’t want to.
Note: “complaint” in the context of diagnosis means condition, illness, or disorder; not criticism.
Postblog: The movement to improve care isn’t anti-doctor; doctors have co-led the movement. Examples:
- The e-Patient White Paper that kicked off a movement, written by a doctor, Tom Ferguson
- The blog and videos of Dr. Mike Sevilla who was a social media pioneer as Dr. Anonymous
- Fellow members of the Society for Participatory Medicine Dr. Danny Sands and Dr. Rob
- Dr. Leana Wen’s new book When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests
- And there are many, many more.
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
- A Doctor-Patient Covenant: Medicine’s Future Found In Its Past
- Trust and Transparency with Disease Activity, Decisions, and Doctors
- The Path of Mercy in Medicine: A Tale of Two Doctors
- Rheumatoid Arthritis Doctors’ Interviews (Doc space heater)
 Harrold LR, Harrington JT, Curtis JR, Furst DE, Bentley MJ, Shan Y, Reed G, Kremer J, Greenberg JD. Prescribing practices in a US cohort of rheumatoid arthritis patients before and after publication of the American College of Rheumatology treatment recommendations. Arthritis Rheum. 2012 Mar [cited 2013 Aug 2];64(3):630–638. Available from: http://onlinelibrary.wiley.com/doi/10.1002/art.33380/full
 Saag KG, Yazdany J, Alexander C, Caplan L, Coblyn J, Desai SP, Harrington T Jr, Liu J, McNiff K, Newman E, et al. Defining quality of care in rheumatology: The American College of Rheumatology white paper on quality measurement. Arthrit Car Res [Internet]. 2011 Jan [cited 2013 Aug 21];63(1):2-9. Available from: http://onlinelibrary.wiley.com/doi/10.1002/acr.20369/full
 Yazdany J, MacLean CH. Quality of care in the rheumatic diseases: current status and future directions. Curr Opin Rheumatol. 2008 Mar [cited 2013 Aug 21];20(2):159-66