Should I “Break up” With My Doctor? 

Lately, I’ve been having a conversation in my head about whether to move on from my current rheumatologist. She hasn’t done anything harmful or disrespectful to me, her waiting time isn’t long, and I like her staff. But over the past two years that we’ve been working together, I’ve felt she hasn’t taken my concerns as seriously as I’d like over side-effects to my medications. She has an agenda and isn’t as interested in what mine is as I’d like her to be. And finally, the last time I had an appointment, she put me on a new medication without any blood test up front, without telling me about the need for regular eye check-ups (something I luckily knew because I’ve taken this medicine before), and put me on a dose that is too high given my body weight.

If I heard my friend tell me what I just wrote, I know I would counsel her to change MD’s. I would hear in her tone her concern for herself and I’d be thinking, “medicine, the third leading cause of death in the country, HIGH ALERT!” All it takes is one misjudgment, one time not speaking up or one time not being heard, and life could take a really bad turn. The stakes are high when you are a patient with a chronic illness, and it is of paramount importance that you have a healthcare team that you trust. Right now, I just don’t.

Consequences of seeing an inattentive doctor

When I’m being treated by an MD who I sense doesn’t have my best interest his/her top priority, I tend to take matters into my own hands. I find myself not taking as much medication as I otherwise would because I worry that I won’t be taken care of if something goes wrong. I’m less honest with my doctor, and I start seeking out alternative treatments. I’ll start wishing it all away in one minute and crossing my fingers that I don’t get really bad in the next. I’m aware of how ridiculous that sounds, but in my defense, fear doesn’t align well with logic, and not feeling taken care of is a good way to breed fear.

So, as I find myself in this position again, I’m trying not to get stuck for too long. I know that if I stay with this MD over time my health will suffer and that the sooner I take action, the better off I’ll be long-term. But, nothing is ever simple in rheumatology. Another thing that’s been on my mind is that the doctor I’m seeing is the only rheumatologist in my area. Leaving her means traveling to see someone. If I do that what will happen if I need care immediately? Will my new doctor want to work with someone who will need an extra level of coordination? I’m working against the very scary fact that there is an ever-growing shortage of rheumatologists in this country and they all congregate in areas that I don’t live. There is no way that I’ll move to a city just for a doctor; I’ve had too many doctors leave or retire to feel confident doing that.

Deciding to find a new rheumatologist

I know I’m a complicated patient. I also know there are many doctors who can handle a patient like me, and do it well- I’ve met a few. I also know that I made a vow to myself not too long ago - to be the best advocate for my life and my body that I possibly can be - which means I know what I need to do. I need to listen to my invisible best friend and find another doctor.

Before I’ve limped along with doctors I don’t respect until I simply leave the area and move. That worked for most of my life because I moved about every three years. This time I’m not going anywhere. I’ve found a place that I love and I’m making a stand. So as I decide to break up with my doctor and take the big step to go back to a doctor I loved who moved out of the area, I have to consider all that comes with the decision. I’ll have a lot of extra expense, a bit more uncertainty about how my healthcare will be coordinated; and yet, I’m still deciding to do it because I’ll also have peace of mind that if the JRA gets worse, I’ll be in good hands.

Finding the right doctor is high on the list of the many hard decisions one has to make when living with this disease. Having the right doctor makes living with this tough disease so much less tough. So I’m scared but excited by this decision because I know that once the transition is over, I’ll be in a better position to move forward with my medical decisions in a way that I feel good about.

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