Most of us have heard of the placebo effect, yes? In medical studies, a group of participants known as the “control group” will be given a sham treatment, often a sugar pill, that they believe is the real treatment. As a result of believing the pill is real, participants will sometimes have positive results such as feeling better or improvement in their symptoms (there are often real chemical or physical changes involved). In other words, the expectation that they are getting helpful treatment has an actual beneficial effect! Pretty cool, right? But in today’s post, I want to introduce you to its less known counterpart, the “nocebo effect,” as it likely is also having an effect on you, and may actually be making uncomfortable situations more uncomfortable.
The nocebo effect happens when a person’s negative expectations of treatment lead to negative side effects. Where the placebo effect makes a person feel better beyond the actual therapeutic effects of a treatment, the nocebo effect causes people to feel worse. Most often the nocebo effect involves mild symptoms that are noted to be common side effects of a given treatment, such as headache, dizziness, or nausea and vary significantly between individuals. But it has been known to cause people to drop out of studies and clinical trials or decline treatment that may be helpful. For example, in fibromyalgia studies on treatments, as many as eleven percent of people drop out of studies because of debilitating side effects from the equivalent of sugar pills. Research also suggests that the cost of treatment can influence perceptions of how effective it is and that how doctors or nurses talk about the effects of treatment, such as expressing uncertainty or emphasizing the negative, can have a large effect on a patient’s responses. Patients warned that a procedure might cause pain were much more likely to report higher levels of pain.
In 2007, a case study in General Hospital Psychiatry (a journal, not a soap) highlighted how powerful the nocebo effect can be. A 26 year old man enrolled in a study of antidepressant medication. For the first month of the trial he reported improvements in his mood and functioning. But after an argument with his girlfriend, he took all 29 of the capsules left in the bottle in a suicide attempt. He went to the emergency room asking for help. ER doctors noted he was pale with heavy sweating, his blood pressure was abnormally low, his pulse was elevated and despite receiving intravenous fluids over four hours, remained sluggish and his heart rate remained abnormal. At this point a researcher from the trial came to the hospital revealing that the man had received the placebo, or the inert substance. Within 15 minutes of receiving the news, he was alert, revived, and his blood pressure and heart rate had both returned to normal. In another notable example, after a rumored toxic leak in Japan the hospitals were flooded with patients experiencing nausea, headaches, and dizziness. Investigators found no evidence of a leak and the patients fortunately quickly returned to normal.
Research shows that most of us experience the nocebo effect in some form or another. One of the biggest predictors of the nocebo effect is “social modeling,” or hearing that other people are reporting the problem. Which leads to a dilemma for us internet prowlers who scour the web for information about our symptoms and possible treatments. We may be actually planting seeds of negative outcomes when we read about people who have negative experiences with a treatment we are thinking of trying. And for doctors, it can lead to a conflict, as the ethical thing to do is to inform patients of all the possible negative side effects that can be a result of a course of treatment (those commercials with the crazy side effects that make you think, “who would take this drug”).
Like most phenomena, being aware of it is the best antidote. Especially helpful, according to research, is for doctors to be aware of how they present information to their patients. Medical staff need to be careful of the wording used to describe potential side effects and concerns of a treatment, making sure to present the positives. Instructing patients on how to look for the potential improvements may be a way to balance the expectations.
Even if your provider is not the bright-side-of-life type of person, we can be mindful of our own expectations. And in a much broader sense, we can ask ourselves in how many other areas of our life do we influence our experience by our expectations? From the movie we see, to the restaurant we try, to the new neighbor we greet, whatever we encounter, our positive or negative expectations will shape our experience. We then need to ask ourselves what type of individual do we want to be – a placebo or a nocebo kind of person?