RA, Your Rheumatologist, and You
Finding a good rheumatologist to be part of your healthcare team is vital to managing your RA and your health. Right now I feel very fortunate to have found a doctor I trust and feel comfortable with for the last nearly 10 years. But things weren’t always this way. I settled for the first doctor I went to when I was newly diagnosed at age 18 and stayed with him for 10 long years before having the courage to stand up for myself and move on to someone else.
Diagnosed with RA only a month after graduating from high school, I was a scared and clueless kid, blindly trying to cope with this new devastating disease as well as clumsily navigating a confusing health care system. Probably needless to say, I had no idea what I was doing. I don’t think my parents knew either, really. We were all “winging it” the best we could.
As a naïve and inexperienced teenager, being forced to see a specialist for the first time in my life was overwhelming. I was ignorant of everything: autoimmune diseases, chronic pain, rheumatology, medications, symptoms of RA, drug side effects, and the fact that young people could even get rheumatoid arthritis. This was all news to me.
Being such an ignorant “newbie,” I understandably put all of my trust in my rheumatologist, believing that he truly cared and had my best interests at heart. That was my sheltered, idealist thinking, anyway. And who wouldn’t think that? We’re conditioned to believe that doctors are to be trusted and that they’re doing their utmost best to help their patients, right? Isn’t that how it’s supposed to work?
The bitter truth, in my case anyway, painfully and disappointedly taught me that perhaps not all doctors want to be “team players”—working hard together to ensure the best care possible for their patients. As the years rolled by, full of intense physical and emotional pain from RA, it started to become clear that my rheumatologist was not on the same team as I was.
I remember noticing things right away about my doctor that bothered me. One thing was that he seemed only focused on prescription medications and using me as his own personal “guinea pig” to pump full of several different drugs. Is this normal? I didn’t know. Something about it didn’t seem quite right though. Keeping my mouth shut, I trusted that my rheumatologist wanted me to get better.
His personality also struck me as somewhat odd and unsettling. He was quiet–-almost creepily so–-and all that he had to say during each appointment were a few comments about my medications. No other information, advice, or conversation was offered–-and certainly no empathy or sympathy. I felt like I was trapped in a small room with a spooky robot. Very awkward. Back then I think I felt mostly okay with my doctor’s stoic and impersonal behavior, however, because I was still traumatized about having RA. I didn’t want to spend any extra time dwelling on it.
My rheumatologist appointments were usually something I dreaded, a depressing reminder that this ‘thing’ I had was serious and chronic and wasn’t going away anytime soon–-despite all of my prayers, hopes, and fantasies. A speedy appointment with as little chit-chat as possible was what I thought I wanted back then. Of course I also assumed that my doctor was an expert in his field and knew what he was doing. If he didn’t think we needed to converse more and discuss things more in-depth, then I assumed we didn’t. Of course years later, hindsight made me realize how wrong and unhealthy this was.
As the years progressed and I got to better understand how RA affects my body, questions about my RA and treatments started popping into my head. What about the food I’m eating? What about exercise? What things other than swallowing all of these pills could or should I be doing? To me, these all seemed like valid and reasonable questions. But my rheumatologist did not seem to think so; his usual apathetic personality quickly turned nasty and defensive whenever I dared to ask him something. He acted as though I were personally attacking him and his abilities as a physician.
I was so confused. And stressed out. I was also becoming increasingly frustrated, irritated, and disappointed with my relationship (or lack of one) with my rheumatologist. I felt as an intelligent and invested person, that I should be able to ask him questions—it’s my body after all! Yet I still felt uncomfortable and insecure, intimidated to defer to him and his “expertise.” He was the doctor after all, and I was just the lowly patient, right? I also still didn’t know that the patient-doctor relationship could be much better than what I had.
Finally, after 10 years of having RA, I made the difficult decision to find a new rheumatologist. I was fed up with feeling like I was just a number: unheard, misunderstood, and not seen as a valuable individual—as a human being, with my own mind, heart, and soul. Being disrespected and treated with extreme passive aggressive behavior and condescension for a decade was not the way I wanted to handle my disease or live my life. But while I inherently knew that these were all excellent and valid reasons for me to switch doctors and clinics, it was still a big change and not easy to do.
Despite the worries and uneasiness about starting over and putting my fragile and complicated RA-self in the hands of a complete stranger, I knew I had to do it. Thankfully I followed my instincts, because switching to my current rheumatologist was one of the best decisions I made for my RA and my health.
My rheumatologist today is also quiet and a man of few words, however that’s where the similarities between the old and new end. Instead of being closed-off, rude, and not open to questions or any input from the patient (me), he is extremely patient and understanding. Even if his schedule is crazy-busy and hectic (it usually is), he always makes me feel like he has all the time in the world for me. My former doctor always made me feel as though I were a big inconvenience.
Together with my rheumatologist, we discuss my health and treatments (and anything else I want to discuss, really) as a true team of two; we’re a partnership, working together towards the same goals. He is always patient and understanding and open to new ideas and suggestions. I no longer feel uncomfortable or anxious to ask questions, and I think that’s how it should be.
My hope is that patients will be more engaged, confident, and active participants in their relationships with their rheumatologists as well as with other health care providers and clinic staff. It’s so crucially important for patients to be assertive in their own health care, and to stand up for themselves if they feel they’re being mistreated or if they’re not getting the care they feel they need and deserve.
Remember, ultimately it’s your body, your RA, and your life. You don’t have time to waste staying in a relationship that’s unhealthy or damaging. And keep in mind, there are good, kind doctors with integrity who really do care about their patients and want more than anything to help them get better. If your rheumatologist doesn’t seem like he/she is really playing on your side, it’s time for a trade.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?