One of the more bothersome feedback loops that keeps adverse drug reactions from being recognized is that patients stay silent about their pain and suffering, and therefore their pain and suffering is not recognized or appreciated, and everyone gets to continue to think that dangerous drugs are safe and that adverse reactions are rare. Seeing is believing and neither doctors nor other patients see the ill effects of drugs, in part because we aren’t screaming.
Of course, there are some patients who are screaming at the top of their lungs about the pain and suffering caused by the drug that hurt them—Gardasil, Fluoroquinolone Antibiotics, Lupron, Humira, to name but a few, and are systematically disregarded. Patient disregard, a problem that has bothersome consequences and feedback loops as well, but a topic for another post. This post is about the silence that surrounds adverse drug reactions and how that silence is keeping the problems caused by these drugs from being addressed. It is also about recognizing the rational for suffering in silence, to express my empathy, and to encourage those who are silent to use their voice to help heal themselves and help others.
Silence and Self-Preservation
Silence afflicts the ill for a variety of reasons. There is a lot of shame associated with getting sick. Those who are sick, sadly, often feel that they are less capable, less worthy, less appreciated and less loved as a result of their sickness. To the best of their ability, they hide that they feel unwell, out of fear that they will not be seen as capable of doing their job, of caring for their family, of functioning, either physically or mentally as they did before becoming ill. Silence serves as a form of self-preservation; a blanket of fear that keeps the rejection at bay.
An Element of Guilt
Those who are hurt by a drug or vaccine often feel responsible for the role that they played in taking the medication that hurt them. Some feel guilty for insisting on the prescription from their doctor, or administering the drugs to their child, or self-medicating, and they hide in shame and remain silent.
A lot of the adverse effects of pharmaceuticals are central nervous system related, meaning that many areas of mental health are effected. People are notoriously ashamed and silent about mental health issues. It is easier to deal with anxiety, memory loss, depression, panic, and other symptoms, alone, in silence, than it is to speak up about what happened. After all, if you speak out about experiencing mental health issues, you run the risk of being labeled as crazy.
Additionally, many adverse drug reactions take a toll on every system in the body and therefore it is difficult to describe what is going wrong. How does one explain, to anyone, that EVERYTHING is going wrong? It’s too difficult and sick patients sound and feel crazy, so they stay silent.
Reverence and Respect
Questions are typically asked of the experts, the doctors who prescribed the drugs, the people whose job it is to heal or fix those who are suffering from health problems. Sadly and commonly, when a patient asks her doctor if a medication caused serious side-effects and the doctor denies the possibility that the prescription drug could cause such pain, patients assume that the doctor is right. They might also assume, as a patient asking for help, they are not entitled to question their doctor’s expertise. After all, the doctor went to school for a long time and knows what he or she is talking about… right? So patients assume that they are wrong, their doctor is right, and they remain silent.
Demonizing the Injured Patient
One does not have to look far to see a person who is criticized for telling their story of pain caused by a pharmaceutical. Those who tell their stories of pain and suffering, especially those who tell their story loudly, are often demonized as being anti-medicine or anti-vaccine. They are sometimes accused of being conspiracy theorists, or responsible for the death of those who die from preventable diseases. It is easier to be silent about pain than to be accused of being an anti-vaccine conspiracy theorist, so those who are hurt, but who don’t want to be labeled and demonized, stay silent.
When Doctors Suffer
Those in the medical field are not exempt from adverse drug reactions. Though some doctors, nurses, and pharmacists stay away from drugs on principle, many of them prescribe themselves the same drugs that they prescribe their patients. Sometimes they have an adverse reaction to those drugs. The emotional hardship that I presume these medical professionals experience when they are hurt by a prescription drug may be enough to keep them silent. Silence seems easier than questioning one’s entire world view and profession.
End the Epidemic of Silence—Speak Up
There are many other plausible, personal reasons why people stay silent about the horrifying reactions that they have to prescription drugs. All of them feed into the real risks of these drugs being under-recognized. The silence is, sadly, as much of an epidemic as the pain.
Silence, though understandable, is a problem. How will anyone recognize the problems that exist, if those who know about them, who have personal expertise in the unfortunate area of adverse drug reactions, don’t tell their stories? Doctors, the FDA, the pharmaceutical manufacturers and others involved in the medical field will continue to think that disabling and severe adverse reactions are rare, or that something else “must” be the cause of a patient’s pain, until they hear similar these stories over and over again.
It is only when the voices of the victims are louder than the pharmaceutical advertisements and sales reps that the real dangers of these drugs will be realized. I encourage everyone who has experienced an adverse reaction to a drug to share their story. Post it on your personal blog or Facebook page. Shout it from the rooftops. The stories of the pain caused by adverse drug reactions are important. They matter. Your health matters and the health of those who hear your story and heed your warning, matters.
Even if concerned citizens and victims can’t stop the travesty of the pharmaceutical industry being the 4th leading cause of death of Americans, we can stop the travesty of the silence that surrounds the situation. I know that it’s difficult and that in a lot of ways silence is easier, but I would like to encourage you to please, please tell your story—because it matters.
Note: This article was reprinted with the author’s permission. It was originally published at Hormones Matter.