When My Doctor Doesn’t Listen….
Lately, I’ve been exhausted. The kind of exhausted that makes the word exhausted seem paltry. The kind of exhausted I thought was normal my entire childhood living with JRA, because when I said I was tired, the people around me thought I was tired, not TIRED, so tired that air was hard to walk through. “Kathryn, how are you?” I’d hear. “Tired,” I’d say, and then I’d eat dinner, finish my homework, and gladly jump into bed the second I was able, hoping my brothers didn’t turn on the hall light when they came up to bed.
Used to not being understood
Living with rheumatoid arthritis, you become accustomed to people not understanding your experience, which is why the word “fine,” was my best friend for a long time. But the one person I really want, no I need, to understand what the word tired means to someone with JRA, is my doctor. Which is why when I’m not heard, or even worse, when my issues are not being taken seriously, I tend to get upset, and I start questioning myself, my doctor, and my treatment plan, which is not a good way to go through the day. It’s also not a good way to maintain trust in a relationship; the best way to kill a relationship is to stop listening to your partner.
For over a year now, after I receive my infusion, I expect to feel fluish, and I hope it doesn’t last too long. Unfortunately, for months now, the flu-like symptoms have lasted longer than I’d hoped and this month they never went away. All of my symptoms could be caused by other things, and all of those things have been batted around when I talk about my symptoms to my rheumatologist. Of course, all of my JRA symptoms, taken in isolation, could be caused by other things, which is why diagnosing people consists of examining symptoms as a cluster, not in isolation. The question I always ask myself when this happens to me, is why does this thinking break down when my symptoms suggest that my body is fighting my medication?
This is more of a rhetorical question, and one that will always have a myriad of answers, because people are complex, and doctors are people. They want to succeed, and they want us to do well while in their care. Every time I mention my side-effects I’m telling my doctor that she is failing at doing her job and that can’t feel good. The problem is, I feel worse than not good, and her misjudgment is hurting me to the point that I have to be the one to call it, I have to speak up and say, “That was my last infusion.”
Taking a stand
So, once again, I’m finding myself at an impasse with a doctor and I’m deciding how to handle it. In the past, I’ve asked my doctor what he would do if I was his sister, I’ve stated my case, I’ve pleaded, and because I let my doctor make the final decision, I’ve suffered in silence for longer than I should. This time, I’ve decided to take the direct approach, and say, “That was my last infusion.” I know I only have one more option currently unless I want to start over and re-try medications that haven’t worked in the past, and that this medication works safely for thousands of people. I also know that it isn’t working safely for me and that even though I only have that one other option, I’ve been through more challenging situations than this. It’s my job to protect myself and my body, and even people with the highest amount of education, and the most incentive to support me, don’t always know the best way to do this.
Today, when I call my doctor, I’m not just going to say, that was my last infusion, I’m also going to tell her why. Not to make her feel bad, or teach her a lesson, but to help her to understand. She is a person trying hard to help people with one of the most challenging diseases to manage on the planet. Like me, she is navigating this scary world, but unlike me she is doing this voluntarily. I’m so grateful to her for all the time she has spent in her life learning how to help me. This is one way I can help her. I can make the decision, because I know it’s the right one, and I can help her to understand why. She may not have been listening very well to me lately, but hopefully I’ve been listening enough to her. And hopefully the conversation will lead to better understanding down the road.