As a patient, you do not want to be “interesting.” Being interesting typically means your symptoms are not coalescing into a standard diagnosis or for unknown reasons you are having an atypical response to things that normally work. It means as healthcare workers, we’re not sure what to do with you.
This is one of my most unfavorite things as a provider: not knowing what is going on with one of my patients. Frankly, it makes me grumpy. I’m not as nice to these patients, not because I don’t like them, but because I get frustrated. Getting to a diagnosis, even if it reveals that I was not being as smart of a clinician as I should have been earlier on, is a relief.
I am in the unfortunate situation of being an interesting patient myself. This afternoon I had an appointment with yet another specialist. I had a few goals for the visit, but mostly I was content that this would check another box off the long list of things I have or haven’t tried yet.
My appointment started twenty minutes late, and ran twenty minutes over, with a long wait in the middle. The specialists I saw do not know what is causing my problem, and they don’t know what is going to make it better.
And yet, I left the appointment feeling better about the trajectory of my care than I have for a long time. I felt hopeful, and grateful.
How? Why?
One observation is that the doctors, while acknowledging that they didn’t have a great idea of what is going on, didn’t toss me out like a hot potato. Instead, they expressed an interest in trying to figure it out with me. They discussed the pros and cons of trying medications and therapies that, frankly, they have no idea will work or not, but should be safe to try. They encouraged me to try them, and are willing to do their part in facilitating what they can.
Another observation is that they utilized their connections on my behalf. The fellow and attending physician talked with a colleague who has more experience in the area that my ailment involves, and she joined us in the exam room to tell me her thoughts in person. She offered to discuss my case further with a colleague in a different specialty, as well as to reach out to someone she knows at Mayo Clinic for their opinion.
All of this felt like a giant relief. Up until now I’ve felt like I’ve been the one directing my care, asking to see this specialist then that one, suggesting one diagnosis and then another, asking about specific treatments, not knowing what I was doing. It feels like I’m now seeing people who, if they don’t know what they’re doing, know people who might – and they plan to follow up. It feels like they are going to keep trying things with me as long as they can come up with things to try.
To be clear, none of the other healthcare providers I’ve seen have done a bad job, but none of them seemed interested in taking ownership of the problem or being directive with next steps. And, it may just be that I finally found the specialty that I should have gone to in the first place, and the reason the providers are being so helpful is that they are truly the only ones who can help.
Regardless, I’m grateful.
SDG