As a patient with lots going wrong, I have found that when I try to answer a question about side effects from a new drug, I often get confused. I think the reason is I already have so many of the side effects that appear on every drug list, that is it hard to calibrate an increase in side effects.
I suspect that treatment decisions have therefore been made for me based on what are really guesses on my part. Its good to have my self-reporting taken seriously, but maybe I need some training on listening to my body better.
Remember that most providers are healthy, so that are not used to getting the constant alert messages that us perpetual patients are. They have not developed the suppression and filtering tools that we have.
So, the question is what can we do?
Maybe patients should be trained in mindfulness on this.
Maybe we should test whether patients under hypnosis report more accurately on side effects.
Maybe providers should talk about this, and develop training protocols.
Maybe our research protocols should be improved to be sensitive to these issues.
Obviously, the last think I want is for providers to ignore patients, but true partnering requires careful listening. Thanks to all those who listen to me with care and respect.