As early as the 1950s, researchers observed that in drug trials, patients who were in the control group, i.e. those who did not actually receive the active substance, also reported side effects. How is this possible and what is the relevance for you today?
It has long been known that faith and trust in medicines can lead to improvements in a patient's condition, a reduction in symptoms and even increase the chances of a real cure without the actual active substance. This is the placebo effect.
What we're talking about today is the inverse of this, the nocebo effect, where the expectation that a certain drug will have unpleasant side effects causes real symptoms in the patient, even if they haven't actually received the drug.
Then any symptoms that can occur at any time in an otherwise healthy person, such as headaches, tiredness, mild dizziness - are immediately attributed to the drug and labelled as side effects. People who pay close attention to studying the possible side effects of medicines are more likely to experience these symptoms themselves, because they are constantly monitoring themselves and will immediately notice the slightest discomfort that anyone would otherwise have overlooked or attributed to some other cause, such as a change in the weather.
Reading the list of side effects causes anxiety in the patient, as they do not want to have to deal with the listed complaints. These symptoms of anxiety: palpitations, dizziness, stomach cramps, etc. may be interpreted as unpleasant side effects of the drug.
The side effects a patient experiences are very much determined by their expectations, and their expectations are shaped by the information they have previously encountered about the medicine. On endometriosis forums, you tend to encounter only the horror stories, the outlier negative cases, and this fills you with fear and resistance.
If, on the advice of your doctor, you still decide to take the medicine, there will be little to thank either the doctor or the patient. That's when I usually suggest that people stop reading forums and point out that it's the person who is desperate who is posting on the forums, and the person who has used the medicine is feeling well somewhere, not posting on forums.
The patient's expectations can be influenced not only by the patient's peers, but also by the doctor. It is not always the same how he or she phrases the prescription, as the patient's state of consciousness is altered somewhat and he or she is more susceptible to suggestive comments from the authority figure. A different effect can be expected if you say, while handing over the prescription
"Maybe we should try this and see how it goes." or " We've selected the most effective one for you."Both verbal and non-verbal cues from healthcare staff elicit a response from the patient, which then influences the success of treatment.
What is the solution?
Many people ask me this.
Is it OK for patients not to read the side effect list?
No, not good. On the one hand, this information is necessary, it can be important, it just needs to be managed in its place. On the other hand, a patient with endometriosis may also be taking other medications, so it is important to be aware of whether different preparations are not mutually exclusive. If the prevalence of a possible symptom is indicated, low numbers may reassure the patient and reduce the negative expectancy effect.
Another possible solution is positive visualisation: I often recommend to my patients that once they have chosen a medicine or treatment, they should see it as a friend, a helper, a pill that will help them regain their health, not as an enemy who will cause unpleasant symptoms. With their eyes closed, they can "send" the medicine to the part of the body or organ they want to heal, with their imagination, and ask for help to get better.
Patients who are particularly prone to nocebo symptoms are more anxious than average, more aware of their body's functioning and more worried. If you are experiencing similar symptoms yourself, you may want to psychologist to teach relaxation techniques for stress management.
www.endoblog.hu
Nóra Árvai
psychologist, perinatal counsellor, specialist writer, nutritionist
Make your endometriosis diet a pleasure, not a hassle! The True Endometriosis Diet books to help you do this.
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