My Crohn's Diaries

What you probably don’t know about me, because, well, you don’t know me, is I’m a chronic people pleaser. It comes out often in social settings, but, surprisingly (or maybe unsurprisingly) it comes out in medical settings too. The first doctor I saw who diagnosed me with Crohn’s laughed at me when I asked him a question. I never asked him a question again.

I often walk in with a list of questions, but feeling the rush of the doctor who is already ten or twenty or thirty minutes behind, I chicken out of asking. I am too embarrassed to take notes while I’m in the room. I am afraid of being annoying when I message my doctor’s office during a flare up (more on that to come…).

All of that to say, I struggle with advocating for myself a lot. Which is not a pleasant thing to confront about myself.

I recently (or not-so-recently at this point) began infusions. And up until last month, they put me into remission. I felt amazing. They were working. But the infusion center I was working with was, in short, horrible. I had to call multiple times (over a dozen times once) to get a call back. They wouldn’t tell me when my appointments were until the day before. One of the nurses didn’t wear gloves and set my IV supplies on a cat tree beside my couch without putting down anything to keep it sterile. I was anxious through the entire process, the administrative burden making things worse. I couldn’t tell my job when I’d need off. I couldn’t make plans. I didn’t even know the day the infusion would be to plan around. As a Type A planner, it was my nightmare.

Eventually, I worked up the courage to message my doctor’s office to ask for another option. They immediately began the process of switching to a different infusion center. It meant, however, switching from Inflectra to Remicade which, to everyone’s horror, required the insurance approval process all over again.

But the new infusion center was so communicative, so on top of things, I was relieved even as the insurance company took their time approving it. It was the day before I was due when the final approval came through and the new infusion center got me in immediately. Where the other place didn’t do any introductory call with me, didn’t explain the process, didn’t give me, well, anything, this place called me multiple times to go over the process, the nurse sat down with me and reviewed an entire packet of information about how things went AND how to advocate for myself if needed. The new nurse was extremely sterile, extremely professional, and extremely friendly.

As anxious as I was to advocate for myself, to metaphorically rock the boat, I’m so glad I did. While it was touch and go there for a minute insurance-wise and I momentarily regretted my decision, when the approval came through and I went through my first infusion with this new company, I was so, so pleased.

So, this is a reminder to advocate for yourself. Ask dumb questions. Switch infusion centers. You’re not annoying. You’re not a pain. You’re ill and you have every right to do what you need to do to feel comfortable, to receive treatment, to be a person. Because you’re a person with needs, the same as any other, and you deserve to ask for what you want. To get the information you need. To be heard.

If you’ve got any tips and tricks for advocating for yourself in the medical sphere, especially with people pleaser tendencies, let me know! I’ll be back soon with a woe-is-me recount of my recent flare up. Until then, hang in there and feel better!