Talking to doctors about evidence and post covid symptoms
For the last six months I've been attempting to get healthcare for post covid symptoms. It will likely come as no surprise that this has been difficult. After covid, a very large percentage of people experience cardiopulmonary symptoms. It is very common and you likely know very many people going through this, or could be one yourself.
It takes me a lot of energy to share about this but it's worse going through it and feeling like there's no help, so on we go.
Everyone's case is different and complex. But I've been thinking a lot about the advantage I have being an "evidence expert." I think this has helped me a lot because many medical decisions are about evidence. Yet doctors are bad communicators and frequently bad at evidence reasoning, even ones who might actually know anything about covid. So I usually go into a medical conversation prepared for that. It helps me to decide two goals before every medical conversation:
1) information from them that will help me move a step forward in getting help
2) a specific test, referral, or other concrete action I want them to take.
Respiratory symptoms are highly treatable and very common. Yet I've had to face down a lot of hostility and dismissal. If I had not been prepared to push back, I would have no care. But I've made progress. The three patterns I've found to successfully advocating for post covid triage & care:
1) force clarity from vague language/unclear causal reasoning
2) understand the medical system's triage and decision points, which are usually not communicated to you
3) force a next step of action.
One thing that's helped me do this is developing a script that I take with me to medical appointments. I thought I would share it. This isn't particularly fancy but maybe it helps.
Card 1 has general question prompts. These questions draw from both my professional and lived experience trying to get people to reason with evidence, verbalize choice paths, and think about multivariate causal relationships in order to judge what is the most beneficial thing to do next. In other words, everything that we who are trying to deal with post covid are already experts in. I purposefully choose to try to mix scientific and plain language, and modify in the moment depending on what people seem responsive to. Of course, this is a very difficult dance. But practicing some of these question points can really help in the stressful, very time-limited moment you have with a doctor.
Card 2 is my attempt to break down a specific real conversation I had with a primary care doctor who wasn't listening to my symptoms, and was completely fabricating causes (in this case, a made-up diagnosis of "anxiety," which I did not present with -- this is a very common bias in the medical system that women have to face when trying to get care for cardiopulmonary symptoms). Biased evaluation of evidence is a really difficult and specific thing to try and deal with; ymmv. But I drew on many years of thinking about and knowing the research on such highly motivated reasoning. In this particular conversation I was able to entirely change this doctor's mind about what we did next. I have, sadly, a lot of experience navigating this kind of conversation too.
My single goal in these moments becomes preventing someone from being the barrier to the care you need. That's a different goal than feeling truly "understood" or seen. Obviously, it's not a great time. But there's a very strategic reason to use "warm competency" approach to deal with it. This is not my solution to the problem of bias; it's just a tool I use to try and prevent bias from taking over the process of getting care.
Here's a pdf of both cards you can download: