The placebo effect is one of the most fascinating and well-studied phenomena in medicine. It’s a critical part of clinical trials, of some medical treatments, of research to learn how and why people respond to medications. When people are given something and told it will make them feel better, it often does. When they’re warned it might cause undesirable side effects, it often does, which can create a difficult balance point for medical professionals. They want patients to know about the risk of side effects and to report them if they arise, but they also don’t want to set their patients up to experience side effects by warning them about them.
I experienced a rather spectacular placebo effect in response to a new medication last year, and it was in no small part because of how the conversation about the drug was framed. When it was prescribed, I was warned it might potentially cause a problem, and that problem manifested within days of taking the first dose, well before the serum levels were high enough to cause that kind of response. I’d taken the drug after being primed to expect symptoms, and I experienced those symptoms.
I duly called the doctor’s office to let them know, as I’d been instructed. I was very apologetic and said I knew it was just the placebo effect, but that it was happening anyway and I wasn’t sure what to do about it. The medication manager went through a checklist with me and we discussed the situation and eventually he sort of shrugged and indicated that since I was self-aware enough to know it was the placebo effect, I was probably going to be all right. I should, he cautioned, call again if anything changed.
I hung up and took a few deep breaths and tried to calm down and over the next few days I sternly reminded myself that I hadn’t been taking the drug long enough to experience any changes, positive or negative. Gradually, the reaction waned, and I stabilized, and I’m still on the medication, because it works very, very well at what it is supposed to do. That’s why it was prescribed in the first place, after all; because someone thought it might be helpful.
The thing at the time was, though, even though I was well aware of what was happening, I was still experiencing the side effect. It wasn’t life threatening, but it was uncomfortable, and knowing that it was a false response based on prior knowledge didn’t really help all that much. Being reassured that yes, I was right and it was a placebo response was helpful in the sense that I now understood the mechanics behind what was going on, but it was still going on. And it didn’t really stop going on until I spent a few days in discomfort and a growing sense of unease.
I don’t think the medication manager did anything particularly wrong here; he was thorough about checking for serious reactions and side effects and conscientiously checked in with me for several days to see how I was doing. He felt it was in my best interest to stay on the medication since I hadn’t taken it long enough to really see if it worked or didn’t work, but indicated that if I felt more uncomfortable or something changed radically, I should stop taking the drug immediately and call him. His advice was sound and perfectly medically indicated.
He discussed the side effect with me in a way that wasn’t dismissive; not an ‘ah, the placebo effect,’ but doublechecking to see if something else was going on or if some sort of peculiar interaction was occurring. He took it seriously as something what was happening to me, and this was, I must confess, somewhat unusual for a health care provider. I’m used to being told I don’t know my own body and when I have experienced placebo reactions in the past[1. Evidently I have a very suggestible mind?] they’ve been dismissed or treated as unimportant. I’ve been told they’re obviously false reactions and I’ll feel better as soon as I stop fixating on the situation.
To be told ‘yes, this is a real thing that you are experiencing’ was refreshing, and indirectly, I think it contributed to my recovery from it. I suggested that in the future, when starting patients on this medication, he might want to be a little more circumspect about his warning; he was clearly concerned I might experience an actual reaction given my medical history and wanted to be absolutely sure I understood what that reaction would look and feel like. The new effect, though, was that I was reminded multiple times during my appointment, which very much created a sort of self-fulfilling prophecy; my brain went from ‘this could happen so watch out’ to ‘this is definitely going to happen.’
There’s a fine balance to be struck with disclosing side effects and working through them. Patients need access to this information and they especially need to be warned if there’s a particular concern or risk in their case because of medical history or other factors. Health providers shouldn’t gloss over information about potential reactions and should make sure their patients know how to respond if they start feeling peculiar on a new medication. At the same time, though, they have to be careful about setting patients up for bad reactions by basically giving them a checklist.
And when the placebo effect does occur, they need to treat it as a real experience, because the patient is actually experiencing it. Whatever the origins, the net effect is the same; someone is in pain or discomfort.