Recently, one of my doctor's appointments was made without consulting with me. I was called by the nurse that made the appointment (and yes, it was the real-life Kyle) who just called and told me the appointment time. No negotiation, no "pick from a list of these times". It SUPER bothered me at the time. At first, I wrote it off as just being bothered by everything lately, because I am, and so just add this to the pile, but it continued to stick. I couldn't let it go. It was for my radiological oncology appointment - my first one. I called to change the appointment, but I couldn't without messing with the timeline for treatment, and the conversation yesterday (after trying three times unsuccessfully over the past week and a half to get this appointment changed, I finally got someone on the phone) went something like this:
Me: Hi! I'm scheduled for an appointment in early September, and I need to change it.
Scheduler: Ok! We can get you in for a consult in mid-October.
Me: I can't wait that long without messing with the timing of treatment, which has to be done within 3-6 months of my diagnosis, and I'm already 6 weeks post-surgery, so I'll figure it out and just keep that time. Also, can I ask? Why was this appointment made without consulting me in any way?
Scheduler: That's just how we do it.
Me: You should change that practice immediately. My very busy life does not center around this diagnosis and I'll have to change my whole schedule around to make it. Moreover, who says that's a good practice? Why is that policy in place?
Scheduler: Well when works better for you? (Do you see how she turned it around there and didn't answer my question? Her tone also suggested that I was being entitled about it. Nope!)
Me: I don't understand how that's relevant, but mornings work way better for me.
Scheduler: Ok. We'll remember that for the future. In the meantime, we'll see you on September 9 at 1:30.
I had a meltdown of nuclear proportions about this. I was so pissed that I didn't even know what to do with myself. Once I was done melting down about it, I sat with it. Why such a strong reaction?
What I realized is that the reason for this is because they have me by the balls, and they know it. I had another doctor's appointment at that time and had to cancel it, and I also had times that I needed to see my clients during that time and I had to shift it all around.
The thing for me is this: they deal with cancer patients all day. There's a sense of powerlessness that I've felt about this that I've never felt before. I'm in the middle of a time in all of this medical stuff where I need to be able to have some semblance of control over what's happening to me and my schedule is where I find it in spades, and it was taken away from me in a blink. Is this objectively a big deal? No. To anyone who isn't going through this, of course it's not. But, I can imagine that for other people going through similar, or even more severe things like this, they may feel the same way as I do. The person on the other end of the phone doesn't know or realize that, and neither does Kyle. Neither does anyone who has never been through it. There's a privilege that comes with not having to grapple with something like this that I think a lot of people don't realize.
What I also realized was that this wasn't just about the appointment. It was about the powerlessness. I felt a big piece of grief yesterday that I've been pushing away for awhile, and it has to do with my utter powerlessness to stop what's happening except to accept it and go through the motions of being treated, and there are many things about which I don't have a say. It's so surprising how some of this stuff bubbles up, and what can push on that button unexpectedly.
There's also a piece of this that isn't about me at all. When you have multiple medical things that you're juggling, it's its own full-time job. For someone to just swoop in and assume that you can make it work and figure it out, it goes beyond rude. It goes beyond disrespectful. Due to the nature of my work, I know a lot of people who are managing multiple medical things; I've heard time and time again the frustration of trying to manage schedules and "Oops I have two doctor's appointments at the same time, I can't believe I did that, and so now I need to use my triage skills and figure out which one to keep and which one to reschedule", and from a patient care standpoint, the idea of just scheduling a time for someone without their input is so deeply ableist. It hits two ways: The first is that medical organizations, by doing this, show you that they operate under the assumption that you can't or won't do it yourself. The other is that if you can't make it work, that's just further proof that you can't manage it on your own. The power differential between doctor and patient is only further reinforced that their time is more important than yours, and they have you by the balls, so you are the one who has to make it work. Patients are screwed either way and are treated like they don't know what they need in terms of their own care.
This is changing how I practice clinically, without a doubt. My availability is drastically changing due to all of this medical stuff, and while I don't have control over that, I'm definitely putting more of a priority on letting my clients have more say over when we meet when I'm able to do that. I think that the more say we can give someone when they're going through something hard, the better. Also, the more we can give them the space to say "I need help with this" to the people who are there to help them, the better. Make it safe to ask for help and to change things up a bit in the most basic of ways, and I think people underestimate how much easier that will make people's lives.
I understand that doctors be doctoring. I understand that I'm not the only patient. I understand that they have schedules to keep and patients to treat, and there is a limited amount that I can do about that. All I want is a shred more of understanding that I need a say, too.
At least that's what I'll be telling the patient feedback department when I call them later to start the advocacy train rolling about this.
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