How Patients Think, How Doctors Work

I wish my doctor had time to plug in to what's really bothering me.

Patients need to be a advocates for themselves, especially if they have an invisible disability such as Long COVID or ME/CFS. Most of us wish we could tell our doctor so many things—but there's rarely time. Appointments that last 15 minutes don't leave room for much more than a quick diagnosis of symptoms. Doctors think differently the patients do, which is easy to see in just one clip of The Pitt or any other medical show. They're looking for a way to fix you, while you're talking about what ails you. Its frustrating but that's how doctors are trained.

That's why I created SPIKE! a storytelling game you can play with your peers. You choose a card, tell a story and most often, breathe a sigh of relief when you see a few heads nod or get a few words of validation from a peer. You learn what you can say in a group of your fellow patients, and what you need to say at the doctor's office. Two very different things, often. Here's a story that goes over well with a peer group, but fails miserably in a consultation with a clinician who wants to help with what you need but can't understand your metaphor or how it will get you a diagnosis. You say: Long COVID makes me feel like someone lit a match and it caused a fire in the forest. (The forest is a metaphor for my body.) It is completely "inflamed", making it nearly impossible for me to how to manage my life. I don't really care who lit the fire. That was years ago now. It's almost beside the point. What is central to my life is the fire. The inflammation. I can't predict how my symptoms will change and how they will make my body feel. On a stellar day, I may work for six hours, but on a high-flame day, my joints ache, I get a migraine or allergies kick in and I have limited energy. The shortness of breath is scary. These little fires and putting them out—that's where I need your help—now—while I wait weeks to see an immunologist or a rheumatologist or allergist. What can you do for me, doc? I'd like to partner with you to figure this out.

Notice a silence? A stare? A look of misunderstanding from your clinician? That's not out of the ordinary, and it's likely they are not trying to stigmatize you. The bottom line: Think differently about how you speak with a clinician. They are, unfortunately, on a time clock. Go in with one story, one reason you came that day. Don't expect a lot of big feelings or hugs. Don't take it personally if they don't look up from the computer. Someday, in some other way, I hope that doctors will hear the stories their patients really want to tell. But we're just not there yet. But SPIKE! is, and it's helping a lot of people feel seen, heard and understood.