Why We're Called Patients
There is the old joke that doctors “practice” medicine. This is often followed by the line about seeing one when they finally get it right. But have you ever wondered why those of us on the other side of the exam table are called patients?
An RA diagnosis in itself is an exercise in patience because it is so difficult to diagnose. The aches and pains of RA resemble other, more common, conditions. And the symptoms are transient. You might feel terrible when you make a doctor’s appointment, then feel terrific by the time you actually see the doctor. While there are some indicative tests for RA, such as RF Factor and anti-CCP, they aren’t conclusive and up to 50 percent of patients are initially negative.[i] I am seronegative and it’s very frustrating to not have clinical evidence of disease activity. In 2002 my left elbow was terribly inflamed and swollen to twice its size. While I personally think this was my first RA “attack”, it wasn’t until 2008 (six years later), after multiple doctor visits and even surgeries, that I officially received my diagnosis.
Even after a diagnosis, it takes a lot of patience to be an RA patient. Unlike some diseases, there is no set course of treatment and drug therapies can take up to three months to determine whether or not they’re effective. Imagine taking your car in for a brake job and waiting for three months for it to work. While that’s not an apples-to-apples comparison, it’s really tough emotionally to (first of all) receive the diagnosis and hear someone tell you that you have RA and (secondly) not have an immediate solution. When we go to the doctor, we want an answer of what’s wrong and a definitive plan of action to make it all better.
Sometimes, like now for me, a drug regimen that worked can stop working. This requires even more patience as you search for an alternative and experience yet another period of waiting to see if it works. I’ve been through this before. In the six years since my diagnosis, I’ve been on seven different drug therapies (now starting my eighth).
The latest test of my patience has come getting approval for the new drug. Many RA drugs, especially the biologics, are expensive and require pre-approval by insurance companies. When my rheumatologist and I agreed we needed to make a change and decided on the next therapy, her office was supposed to contact the infusion company who handles the insurance filing and sets up the appointments. After a week of not hearing anything, I called my doctor’s office back. The physician’s assistant, who is new to the practice, had neglected to send the orders. We got that sorted out but it’s now a week later and I still haven’t heard anything. Now I’m calling the infusion company directly (and talking to voice mail). This will work itself out in due course, but what little patience I have is wearing thin. I still have RA. I still have all the pain and stiffness. I just don’t have the drug treatment to help slow it down. And when I do get it, I won’t know if it will work (at least for a while).
A comorbidity is a secondary condition that happens in conjunction with or as a result of a primary condition. For example, you might have RA and also have hip bursitis. I’ve decided that patience is a comorbidity of RA. If you don’t have patience before your diagnosis, you certainly develop it as a result of having RA.1
Does your RA impact you financially?