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The Epidemic of Silence with Adverse Drug Reactions

woman reading drug side effects

A lot of the adverse effects of pharmaceuticals are central nervous system related, meaning that many areas of mental health are effected.

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.

Mental Health

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.

12 Responses to The Epidemic of Silence with Adverse Drug Reactions

  1. William Schmittmeyer Reply

    August 9, 2017 at 6:51 pm

    In 1913 Rockefeller and Carnegie created western medicine and opened Sloan Kettering hospital in NY The reason was profit.You could not make a huge profit on natural medicine.They bribed most medical schools to only teach western medicine and patented pharma drugs.And that is how our nightmare began.To most I have heard from in their nightmares with doctors try jcrows 2% iodine solution 4-6 drops in any liquid It gives you your energy back but do some research too much can be dangerous It helps the thyroid .take with 200mcg of selenium

  2. Barbara Wills Reply

    August 8, 2017 at 10:45 pm

    I am so sorry for all the suffering that now goes on. It didn’t seem to be this way when I was growing up. I believe there are very few people today who don’t have some sort of lasting reaction or horror story to tell in regards to our medicine of today. I read once that we now treat chronic issues like critical issues used to be treated.
    Sad.

  3. barbara lindemann Reply

    August 2, 2017 at 6:50 pm

    completed!

  4. Sue G Reply

    August 2, 2017 at 11:45 am

    I had an experience recently concerning prescription drugs that I think others should know about. I was being seen by a hematologist for a blood condition which caused me to have extreme itching of upper body. The doctor prescribed three medications in the process of diagnosing a possible uncommon disease. One was a very strong antihistamine for relief of itching. Another was for possible gastric problems. After nearly a year of testing & continued ingestion of these meds I had developed side effects which were alarming, brain fog, memory loss, fatigue. I started researching this and found that the antihistamine was a strong sedative and part of a group called anticholinergics which research has shown to cause cumulative buildup effects in the brain causing cognitive impairment possibly leading to dementia & Alzheimer’s disease,especially in older adults. The effects of these meds do not disappear. This makes me wonder why so many seniors have
    these devastating conditions. Most are not told by the doctors as I was not warned and sometimes nobody is monitoring all the drugs they’re taking that are causing anticholinergic effects. There are many drugs such as tricyclic antidepressants, first-generation antihistimines, bladder antimuscarinics & more that are all cumulatively building up effects in the brain. Caregivers and doctors need to be aware and be more accountable for the good of the patient, especially when they have cognitive problems and can’t do this for themselves. There is much info online about this. please do the research.

  5. Roberta cowan Reply

    August 2, 2017 at 9:04 am

    It is good when nurses and doctors speak up but is anyone listening? Robert Kennedy jnr has tried. Posey has also Tried!

  6. Anne Grace Reply

    August 2, 2017 at 7:45 am

    I had an adverse reaction to an anaesthetic I was given while having a tooth prepared to fit a crown . The tooth in question was the bottom molar on the left hand side in front of my wisdom tooth. The dentist gave me two anaesthetics as the first one didn’t work fast enough to numb the area being worked on The anaesthetics used were Lignospam (first one ) the second one given at the root of the nerve ,i.e. as a nerve block, instead of into the gum was Scandanest.
    Half an hour later I developed pain in my left hip which causes me to limp . I assumed this was temporary but six years later I am still limping . I empathise with all the reasons above for not reporting this .I got the names of the anaesthetics from the dentist ,he never enquired why I wanted them. I have tried detoxing them using the CEASE protocol but I feel now it was damage to the trigeminal nerve during the administration of the second anaesthetic which caused the main damage I am using Nat Mur to try to repair this and am having some success

  7. Sandra Villarreal Reply

    August 2, 2017 at 6:48 am

    That’s right. We tell our Psychiatrists until were blue in the face at the disabling side effects, adverse effects and mentally torturous withdrawals were forced to endure under their care. They don’t listen, nor do they care. We are rarely, if ever believed because according to them, what could we possibly know, we’re mentally ill, although psychiatry has never proven one single mental illness exists. When we ex-psychiatric patients are silenced as I was by my Community Mental Healthcare then we take the next step and write a book about at how we suffer endlessly and needlessly under the care of our Nazi Psychiatrists. Operation Paperclip. Our United States Psychiatrists were recruited from Nazi Germany.

  8. Deni Ann Gereighty Reply

    August 1, 2017 at 10:11 pm

    I used to be an RN, with a BA in medical anthropology and a BSN in nursing. I have worked in the state, private, military and HMO systems of hospital care. I am trained in research. I had had vaccinations and medications that I have suffered severe adverse reactions from and I speak out! Any reaction to any drug or vaccine should be and can be reported to the doctor, or nurse so it is posted to the FDA adverse reaction website as well as posted on facebook and other places. Facebook stories do not matter to the FDA, which is in the pocket of Big Pharma! Only duly recorded adverse reactions can be counted and you have to be a professional to post it, with all of the information requested, time and date and place of administration, name of patient, and doctor and specifics of all reactions. This takes a lot of time and busy doctors and nurses do not have this time unless a patient is screaming and serious complications like hospitalization occur. Because we got all our vaccinations as kids, I had to get more as an RN and on L&D, even more and every exposure meant getting blood titers drawn and re-vaccinated. I had measles, but could not get separate vaccines so I have had the MMR multiple times, which has BEEN A VERY BAD THING! I have had adverse reactions that are permanent and yet, no one has compensated me or initiated class action law suits. Multiple excessive but required to keep my job vaccinations contributed to my diabetes, weight gain, PCOS and cancer. A diabetes drug caused me permanent congestive heart failure. Many oral prescribed medications for serious health condition have called allergic and mental health conditions with serious consequences re jobs and legal action. I am perfectly sane, non-violent and once off the bad legal prescription meds I am fine, but I cant tell when I am taking a drug I am having a hallucination or total personality change until someone tells me. As diverse as an asthma drug, an ear infection drug, oxycodone-one use and practically in the ER with itching, flushing and hallucinations and no pain relief! I also have fibromyalgia or chronic fatigue syndrome, both diagnosed in a major medical center by 5 doctors who could not agree, altho they are mutually exclusive! Speaking up is important but be aware that a doctor will not take you off and report it unless you insist it be reported to the FDA. Some side effects are permanent and will not be reversed by stopping the drug, even 11 years or more later. Every drug you take can give you side-effects, which will vary because every person is unique. If a family member has a bad reaction, you NEED TO KNOW ABOUT IT! Even a problem from general anesthesia in the family is important to be know, on every chart and before surgery, even in an emergency. I no longer have a nursing license due to illness but I am still a passionate patient advocate. Speak up and dont forget your Congressional representative and senators if you want affordable health insurance and quality care.

    • Donna Reply

      August 2, 2017 at 11:05 am

      You are right about speaking out and up about things. My blood pressure went up considerably after talking to a technician working at the big hospital and how they were required to take vaccines etc. People need to get wise to what is going on with our health and the medical system which is being bantered about these days with the Affordable Care Act “discussions” everyone being politically correct – thank you for sharing.

      • Cheryl Reply

        August 6, 2017 at 4:15 pm

        Donna, I read your post and wonder if you had taken a fluoroquinolone such as: Cipro, Levaquin, Avelox or floxin. I am disabled from generic Levaquin, levofloxicin. Often when the docs don’t know whats wrong with the patient they will diagnose fibromyalgia. I have body wide tendon pain, neuropathy, muscle wasting, fatigue, CNS and autonomic nervous system damage and more. I’m on disability because of this. The FDA has recently put more black box warnings on these drugs. Look up fluoroquinolone toxicity. There are FB groups for this. I’m sorry you are going through so much and hope you can recover.

    • barbara Reply

      August 2, 2017 at 6:10 pm

      Deni, I am so sorry; I get it, suffered since Feb 5, 2001 the same from terrible nerve damage after an injection. I suddenly could not speak even before the needle was removed. Filed complaints to the correct places. Worked in Departments of medical research at UCSD Med School and VA for years. Was a CA primary care practitioner when injured, had to let license expire. Was in terrible head pain, seizures, severe memory fragmentation. Isolated myself, did own therapy program, especially no pharmaceutical meds. I started recovering in 2013, now am better, but not the active person that I was. Still have pain, but not as severe. doctors were oblivious, some very rude, a couple admitted that they did not study toxic material in medical school, at least they were honest. Nor nutrition, nor pharmacology, not chemistry, in depth. I was a very healthy individual that studied martial arts, did technical rock climbing, and hiking. Now it is a chore to walk a great distance. No one really listens – just state that I must be really sensitive. To a poison, really. I hope they remember when they are injured in the same manner, and remember some of the hard earned lessons that I imparted to them. I hope you are recovering gradually.

    • Cheryl Reply

      August 6, 2017 at 4:21 pm

      Deni, I accidentally left my msg to Donna instead of you. Its right below her post. Sorry for the confusion.

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