My Imperfect Patient Experience
Last updated: September 2022
I've had so many negative experiences at medical appointments that I've stopped counting. I have gone through ridiculous wait times, difficult blood draws, doctors who blew me off, belittled me, or left without answering questions, staff that made hurtful comments, and so much more.
While I have a long list of bad patient experiences, I've never had one that was my fault–until last month. Life threw me one too many curves, and I was the reason the appointment was difficult, which left me feeling horrified and embarrassed.
An appointment I was not expecting
I recently had some test results that prompted a semi-urgent follow-up. The doctor’s office called and wanted me to come in the next day. I wish it was that simple. I have 2 young kids, and I did not have a sitter or family available to help that particular week.
I made the appointment a few days later after asking to make it virtual. While this office technically makes virtual appointments, it's not their norm anymore, and the staff makes it seem a little burdensome and inconvenient.
So the virtual appointment already felt like an exception - almost a favor. Since I didn't have help, I made the appointment for when my youngest son normally naps, and I figured my oldest son could watch his favorite show that – usually – keeps him glued to the television. Plus, my husband was working from home that day, so he was potentially able to help.
I felt kind of proud. Despite being an overwhelmed mom and patient, I had found a way to make it work. Or so I thought.
Life often doesn’t go as planned
I was late for the appointment. Generally, I go to great lengths to be early for appointments, but somehow I was late for a virtual appointment in my own home! I am very conscientious of others' time, so I was absolutely mortified.
My kids had needed "just one more thing" until I finally could leave. Finally, I logged on to the computer to find that there were pages of unnecessary check-in forms that would take me forever to fill out, but I started flying through them anyway.
Then, the doctor called me on the phone and told me she had sent a link so we could start on time. I didn't think my humiliation could get any worse. I wanted to tell her this was not my normal, but we jumped right into discussing the test results that prompted the appointment.
Then the internet connection broke.
Trying to listen despite a noisy background
We ended up having the rest of the appointment on the phone. Which was technically fine but certainly not ideal. Another non-ideal circumstance popped up when my youngest decided not to nap. He was crying in his crib, which was not only loud but distracting and upsetting to my mom's heart. I needed to text my husband to make him aware, but I was writing fast – trying not to miss a word as I jotted down the mildly irritated doctor’s instructions on what to do next medically.
I felt like I was in a comedy movie when my 4-year-old suddenly burst into the room. I was confused because he doesn't leave the couch when his favorite show is on. I scrambled to get him set up watching something else on my laptop – all while listening to the doctor.
I had placed myself in a separate room because my oldest son is autistic and doesn't tolerate adult conversations well right now. Despite getting another video going, he wanted my attention, and he wanted me to stop talking. I was still trying to ask my doctor important questions while my son loudly protested. I apologized profusely for the absolute chaos that was happening during our appointment.
It was too much stress for me
Finally, I was able to hang up the phone. I went into my husband’s office and asked him to handle the kids for a few minutes because I was about to have a meltdown.
I lay in bed and cried about everything. About always needing more help than I could ever actually have, about having the doctor do me a "favor" and having it go so poorly, about my plan not working, about being a flawed patient, and, most of all, about life as a chronically ill mom just being so hard.
It feels impossible to handle everything going on in my life with my chronic illness and my family. I had to take a moment to grieve that managing my life was this tough and stress-inducing.
Is there a lesson here?
Well, I learned to have more than one backup plan for this situation. I was also reminded that I don’t have much control over my life, even when I think I do.
I don’t think I have ever been a "bad patient" before. And I put that in quotes because there wasn’t much I could do about the things that went wrong. I'm not actually a bad patient, though it may have seemed that way.
Generally, I try to either have child care for all my appointments or only take my youngest along. But people cancel, things go awry, and it’s just tough when you’re averaging 4-6 appointments every month and then have an urgent one.
So many things went wrong, but I did my best. I'm trying to remember than instead of feeling guilty or like I failed. Somehow, I still managed to get the important notes and I’m taking the next steps for my health.
Have you ever accidentally been a less-than-perfect patient?
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?