So what happens when you find yourself in that elite group of people who fall into this "rare" situation?
I've worked with clients who are in this club and have personal experience, as well. According to the "official" statistics for the widely used drug Infliximab (brand name Remicade), around 3% of people in a sample of about 5000 patients experienced a reaction during one of their infusions. 3% sounds like pretty good odds to me. Heck, when I run statistics for the research I do if we get a less than 5% chance our results are due to chance, we get published.
Unfortunately for me, I had an infusion reaction during my 3rd dose of Infliximab. Even with medications like benadryl or prednisone to try to prevent it, my body said nope, we're not doin' this. 3%.
In my work as a health psychologist, I've spoken with physicians about these low-probability problems that patients experience, and the reaction tends to be "well, the odds that that's happening are so low..." I remember distinctly a woman I was working with who had chronic stomach pains but her tests were entirely normal. I reviewed the side effect profiles of her medications for other conditions and found that for one of them, 2% of patients experienced the same symptoms she was having. Her gastroenterologist was skeptical this was the cause but when she stopped the medication, her symptoms went away. Was that a coincidence or did she fall into the 2%?
For those patients who have experienced living in the 5% their subsequent reactions to statistics seem to follow similar logic: Well if I got that and the odds were so low, why wouldn't another low odds problem also happen? Being told "you only have a 4% chance of this side effect" when you've already had a 4% chance side effect loses its comforting quality. Even though the odds of 2 entirely separate events are not related. We start to think there's something "special" about us and our risks are much higher than those listed on the drug information sheet.
What can then happen is we have a patient who's concerned about a rare side effect who may be seeing a physician who believes the percentages are solid and shouldn't impact treatment decisions, thereby creating a rift in the care team. Patients may feel pressured or anxious about their decision, physicians may feel unheard or their expertise challenged.
There's no easy answer to this conundrum. Have you experienced the 5%? What's your take?