Late Monday morning I finally gathered up the nerve to call my rheumatologist’s office. I was super anxious about it because, in the past, I’d asked to see another rheumatologist in the practice and been denied. Apparently they have a policy that patients can’t switch doctors.
I’ve never heard of any policy like this, but no matter how hard I pushed at the time, the office staff refused to let me see the other rheumatologist—even though Dr. M had suggested I see a psychiatrist and sent me on my way. Even though my weekend was very calm and relaxing, by Sunday night I was a ball of nerves again. What if they wouldn’t let me switch? What would I do then?
It wasn’t until I got to my best friend’s house that I was able to call. Sometimes, you just need a buddy. We sat in her office and, while she worked on something for a client, I got on the phone.
“Hi,” I said when one of the receptionists picked up. “I need to speak to someone who I can leave a complaint with…”
I explained everything that happened last Thursday. Calmly. Even though my hands were shaking. The woman I spoke with was very nice. She listened. She didn’t interrupt me. When I finished, though, she explained that it’s against their office policy to let patients switch doctors.
It felt like the floor had suddenly dropped open underneath me and I’d plummeted through. Still, I took a sip of ice water and a deep breath. I was in control, and I wasn’t taking no for an answer.
I reiterated my concerns, that it just was not okay for Dr. S to come in and change everything when I’d been doing so well. Even if sulfasalazine was giving me nasty side effects, it had been helping—which was what Dr. M was hoping. Seeing the results told us that she’d been right, that I have enthesitis related arthritis. We just had to try another DMARD.
I explained that I had really wanted this addressed before it gets much colder, since that’s when I really have trouble with my arthritis. (And I’m already having a really hard time with the cooler temps, but I guess that’s another blog post.) She repeated their policy and explained that, since it’s not really a complaint and “more a difference of opinion,” they wouldn’t ordinarily have me switch. Plus, Dr. C is not currently taking new patients.
Again, I felt the ground giving way beneath me.
But, she said, it just so happens that a new rheumatologist is joining the practice at the end of the month—and she takes my insurance. (Which is state insurance, and boy, do patients on state insurance get treated differently. But that’s also a post for later.) The receptionist told me that she can talk with Dr. S and she’s sure that he will okay the switch. In the meantime, she asked, “You are going to do your blood work, right?”
“Yes,” I said. “Of course.”
She asked if I wanted her to wait to talk to Dr. S, and I said no—I’d rather her speak to him right away. So she was going to send him a message and then the office would call me once they got the new doctor’s schedule. I thanked her and, mostly satisfied, hung up with her.
When I got off the phone, Sandy—who’d been sitting there the whole time—told me that she was really proud of me. “You handled that conversation really well.”
Unfortunately, it just comes with the territory. For the last near decade, I’ve had to learn to advocate for myself. Doctors and their offices are busy, at best. At worst, they don’t want to listen for whatever reason. I’ve been steamrolled by so-called professionals many times—people telling me there’s nothing wrong with me or it’s “just” this or that. It’s hard not to feel beaten down. Throughout my early life, I got spoiled with a pediatrician who usually knew the answers and always listened to my parents and me. I could trust that he would help me feel better, or at least take the time to try.
I could get into all of the things wrong with the medical system—especially when it comes to being a chronic illness patient and a woman—but I honestly don’t have the spoons right now. I’ve spent the last nine years feeling invisible in so many ways. I don’t want to be erased. This is my quality of life, and no one else is going to fight for it.
I’m the only one who can.
I have a young family member who is in the DCF system and placed with another family member. He is special needs and, through DCF, has an APRN social worker who oversees all of his medical and occupational needs. She keeps track of everything and assists his foster parent with setting up appointments and getting different issues resolved. The other day I was thinking about all of this, and how helpful it would be if all people with chronic illnesses were able to have an APRN like that.
I know my body really well, but I don’t have all the knowledge that an APRN does. And since they understand the medical system as well as various illnesses, they can help you accomplish quite a bit.
I don’t know what it would take to get something like this rolling in the U.S. Hell, maybe it already exists. But it sure would be amazing.
Anyway, I’m moving forward. I’m nervous because, for the next month, I don’t exactly have a rheumatologist. I can’t call the office with complaints about my knees, hips, and elbows and expect any results (since Dr. S insisted that I can’t possibly have arthritis, that I don’t need “those medications,” and that I “should be grateful”). It makes me both angry and uneasy. It’s not fair.
But for me and so many others, this is the way it is. Not only do we fight our bodies, but we also fight for our rights as patients. And I get that rheumatologists have polarized opinions on seronegative arthritis. There are countless medical journal articles and research about both opinions. Dr. M was strictly of the “arthritis has to show up in blood work” camp—until I refused to stop coming to appointments and kept reiterating my symptoms and issues. She finally decided to treat me based on my symptoms rather than blood work.
It took me almost ten years to find someone who would.
I can’t afford to spend anymore time working with another doctor who doesn’t believe in seronegative arthritis. Dr. S was very nice and is very much entitled to his opinion. But this is my life, and I refuse to continue being miserable in order to hold his or anyone else’s hand through ten more years of jumping through hoops.