I retired from an executive job with a state agency that managed benefits for employees of the 2nd largest state in the US. I have some pretty impressive experience in communication, education, policy-making and even drafting of legislative language for health, pension and investment programs. So, I like
to think I know a thing or two about navigating health care systems, dealing with doctors ... you know, being a patient. After piecing together the crazy quilt of my symptoms, treatment and misdiagnoses over about 7 years, I connected the dots of my own diagnosis and gently asked for tests and a referral that led to my eventual diagnosis of RA, and finally - treatment.
I don't blame anyone for my being somewhat difficult to diagnose; RA is just one of those diseases that doesn't come to mind when you see some of the widely varying symptoms. It doesn't present the same in everyone. Some patients have outrageously obvious lab results; others are what is called "sero-negative", meaning they don't carry the typical blood markers for inflammation that constitute the smoking gun for a diagnosis of RA. Some patients have extreme swelling; some rarely swell. The list goes on.
But there are a few defining elements to RA that are virtually universal, symptoms that every RA patient brings to the table like stiffness, pain, fatigue, malaise ( a fancy word for feeling like crap - I describe it as that feeling you have with the flu, like "just kill me now"). Fatigue is an indicator in many illnesses, as is malaise. A doctor can easily overlook RA when considering these. And heck, I'll even give them stiffness, because until you know they want you to call it that, it's easy to describe it differently. That leaves pain, and pain is considered subjective. Here's where we get into trouble.
There is wild variance in how doctors view subjective evidence such as pain or symptoms that may have been apparent 3 days ago but aren't now (like swelling).
Some doctors consider what the patient says, and include those observations in their decision making. Others refuse to consider "anecdotal" evidence - meaning statements their patients make about their symptoms.