When I have bad experiences with rheumatologists, I have tried to keep the faith and believe that there is one good rheumatologist out there. I tell myself that one bad experience is just that.
My search for a decent rheumatologist in New York was bad from the start. The first one I saw decided I was just fine even though I was experiencing a scary flare and falling all over the place. He had to go.
I needed a reason other than “all rheumatologists suck” to explain to myself why Doctor One had been so bad. So I decided that the bad experience could be attributed to Doctor One’s gender. He was an insensitive man, after all. I needed a woman.
I found a 40-something female rheumatologist whose office was conveniently located near Gramercy Park, a walkable distance from my Midtown office. She was also conveniently affiliated with a big-name university, which made me feel more comfortable. My faith was restored!
During my first visit, she gave me a full exam. Unlike Doctor One, Doctor Two was willing to acknowledge just how swollen my joints were.
We went through the history of my RA, which took forever, as by that point I’d had it for 29 years. I rattled off all the meds I’d taken.
“Tolectin, Ridaura, Arava, Plaquenil, Naprosyn . . . .”
“I see,” she interrupted. The full list wasn’t necessary.
I had one goal I wanted to discuss.
“I’d really like to get off prednisone, but I’ve been on it for so long . . .”
“Yes, your face is very cushingoid,” she told me. “I can see the signs.”
She took her pen out of her lab coat pocket and began to poke at my face with it.
“Right here,” she said, drawing an invisible line along the edge of my jaw.
“Please, stop,” I told her. Tears were welling up. “I know what I look like.”
“Yes. Well, your face is just remarkably asymmetrical,” she couldn’t resist adding.
And then the tears started falling.
I have had a handful of bad experiences with women doctors, all of whom are five or ten years older than me. The first visit starts off with small talk, and once they learn I’m a lawyer, they start talking to me like an equal. They dispense compliments related to my ability to find professional success despite my illnesses. They say things meant to flatter me, like “Well you know better than anyone what this disease does to you . . .”
And then they throw in an appearance-related insult that feels like they’re putting me in my place.
“Haterade,” my younger sister told me. “Your face is fine.”
“Let me guess, she was fatter than you,” my sister said after I called her crying and told her what Doctor Two had done.
And every time something like this happens, the answer is yes. The doctor insulting me is less attractive, less fit, and arguably less professionally together. Which somehow makes insulting me irresistible.
Doctor Two fit the mold, but once she’d reduced me to tears, she’d also regained control of the visit. Maybe that was the point.
She decided that the Enbrel I’d been taking for three years wasn’t doing its job. I’d already tried Humira, so she wanted me on Remicade. Because she was affiliated with a hospital equipped with an infusion room, it was easy to schedule my first Remicade appointment.
She did not, however, test me for TB, a decision that would delay my care when I left her several months later.
The Remicade took months to work, and she had to play with the dosage. In the meantime, I was flaring all the time.
I was also having trouble getting in to see Doctor Two. I’d leave messages with her receptionist, asking to come in the next day, and wouldn’t get an answer until three days had passed.
Doctor Two gave me her email address, but she was just as unresponsive as her office staff. I gave up trying to talk to her when I was outside of her office. And I continued to flare.
Once I flared immediately after an infusion.
I called her because I was worried I was having an allergic reaction. The nurses who gave me the Remicade infusion told me to be on high alert for any strange post-infusion side effects.
My knees were so big I couldn’t pull my jeans over my kneecaps, which seemed strange enough to qualify.
I called Doctor Two. And I called her again and again. When I finally got her on the phone, she was annoyed to have been bothered after hours.
“Elevate the knee and ice it,” she snapped.
“That’s it? I asked. I’d been icing and elevating both knees for hours already. Did she hear me tell her it was both knees? And what RA patient doesn’t know about ice and elevation?
“Well, you could go to an emergency room and have your knees drained. But I wouldn’t recommend it,” she said.
It was like we were discussing the best place to get your oil changed instead of the best way to get me out of excruciating pain.
“What emergency room?” I wanted to know.
“I don’t, know where do you live?”
I’d expected her to recommend one that she trusted. I expected her, in fact, to call ahead and make sure that someone who’d drained knees before was available.
“Why don’t you just come in and see me in a few days?”
I showed up when her office opened the next day. My husband was with me.
She decided to drain my knees. About 40 ccs came out of both. She was nervous during the procedure—and because the knees were so swollen, she had to use a bigger-than-normal needle, and even still, it took a long time. She poked around inside both knees, trying in vain to find the pocket of fluid to drain.
It took about thirty minutes to do both knees. I noticed, when it was over, that she wasn’t wearing gloves. And I couldn’t remember having seen her wash her hands. And if she had, it wouldn’t matter—she’d touched drawer handles and doorknobs, my skin and her face in the meantime.
At the end of the procedure, she took a deep breath.
“I didn’t appreciate the way you spoke to me on the phone last night,” she announced.
I looked at my husband. He looked back at me. We actually laughed she was so out of line. My cheeks were still wet with tears.
“Well, I don’t think this is a good fit,” I said. “I’ll find a new doctor.”
“I was going to suggest that,” she explained, jumping at the chance to make this her idea.
Before I left that day, she didn’t give me a referral. She didn’t offer to follow up with me until I found someone else. She didn’t tell me how to treat my just-drained knees.
Thirty days after this all went down, I received a letter from Doctor Two. It was backdated to the date of the last time I’d seen her, the day she’d drained my knees without washing her hands or wearing gloves. The day she’d chosen to complain about my phone call conduct right after draining 40 ccs out of my swollen joints.
The letter stated that she no longer could treat me because I was non-compliant.
This was amazing. An amazing, calculated, cover-your-ass lie. But a strange one to make given that her behavior had been witnessed by my husband, and that she’d never said anything about my failure to follow instructions.
So I called her and I emailed her, asking repeatedly exactly how I had been non-compliant. I reported her behavior and her accusations to the hospital she was affiliated with, once again asking about what instructions I’d failed to follow. I highlighted how serious my illness was, and how potent the drugs I was taking were. If I was doing something wrong, I needed to know.
No one answered me. Of course not. I wasn’t non-compliant. I was a potential lawsuit.
In the meantime, I made an appointment with another doctor affiliated with another well-known hospital. The appointment was about a month out, and I needed to schedule my Remicade infusion immediately given that I was going to be changing infusion centers.
“We can’t schedule you before you see the doctor,” the new hospital explained.
“But she has my records, right? I’ve been on Remicade for a while. I need to schedule the infusion to stay on schedule.”
“Yes, she does. But you need a TB test. Your insurance requires it. We can’t schedule you before we get a negative TB test.”
Doctor Two had skipped that part.
Her mistakes would linger over my medical care for a long time. Her TB oversight destroyed my ability to continue my Remicade treatment without interruption, prolonging the flare that hadn’t been solved by her sloppy knee drainings. And the memory of her behavior could make me shiver whenever it crossed my mind. It was just so horrible.
Doctor Two did me a great deal of harm. And she just didn’t care.