Why I Look Forward to Infusion Day
I recently had an infusion, something that happens 4 times a year for me. As I was getting settled in my chair, I realized I was happy to be there.
Of course, I was happy to have a medicine that controlled my RA without too many side effects, but that wasn’t the cause for my light mood. The reason why I was happy had more to do with what happens when I’m there.
I feel cared for by my healthcare team
During the few hours of my infusion, I am offered food, drinks, pillows, a warm blanket, and if I’m lucky, a foot massage given by one of the hospital volunteers. I am surrounded by health professionals who have the time to talk to me about how I’m doing and the experience that gives them a deeper understanding of what it is like to live with a painful chronic illness.
They remember what was happening with me the last time we saw each other and want me to fill them in about how I’ve been doing since then. There is no agenda other than helping me to feel comfortable as the drug enters my system. When I am having an infusion, I feel cared for.
We need to feel like we won't be forgotten
Wouldn’t it be great if we could all feel that way any time we enter a medical setting? All too often, I feel rushed, more confused, and less hopeful after visiting a doctor. I’m tired of waiting months for an appointment and then getting told my issues are "complicated," which I’m convinced is code for, "Good luck, but you are on your own."
When I am in front of a doctor, I know that we don’t have much time and a lot to figure out, so I’m nervous going in, and I feel lucky if all of the specialists I see have actually communicated and given the right information to my doctor. If something was missed, it always feels like it's somehow my fault — did I forget to fill out a release form or make that call 3 months ago?
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How do you feel about your infusion days?
The irony is, the more advanced medicine seems to get, the less patients get the attention that they need. Along with test results and medication, we need to feel like we won’t be forgotten, that our doctor will stay with us and see it through until the day we are suffering less. That doesn’t seem like asking too much.
Doing our best to navigate a complex system
The reality is, the pandemic has stressed the medical system, there is a shortage of healthcare workers in most settings these days, and our medical professionals are working in a system that demands too much from them. We are all in a difficult spot, and most of us are just doing the best we can. Just like my body, medical care these days is "complicated." Until some of the big issues are fixed, we will all just have to navigate this complicated system the best we can.
Which is why I actually enjoy infusion day — feeling a bit pampered, less complicated, more understood. Now, if only they would put recliners and heated blankets in waiting rooms...
Community Poll
What flare symptom do you wish you could avoid the most?
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