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 here on Hormones Matter. 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.
Information about Fluoroquinolone Toxicity
Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on FloxieHope.com.
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This article was published originally on Hormones Matter in October 2013.
I’m a retired RN. My sister had MSA and was put on an antibiotic that sent her into a psychotic state. I don’t remember the name of the abx. I called her doctor and told him about her psychotic symptoms but he refused to take her off of it. I said I’m her sister and I’m a nurse and you are a quack and I TOOK HER OFF THE DRUG SHE HAD NO BUSINESS BEING ON AND YOUR FIRED!!! She was extremely psychotic. I couldn’t believe how incompetent he was. I looked up the drug and side effects included psychotic episodes….I hope you are doing better.
It was embarrassing for me to go out in public after Gabapentin, generic for Neurontin caused me to develop a sudden onset of a movement disorder in 2008. When a doctor has an iatrogenic error, they handle it by getting all their ducks (Docs) in a row. The doctor who ordered my brain MRI told me, “Your brain MRI results aren’t back yet, but I’m sure you didn’t have a stroke.” I didn’t sign for my results until 4 years later, but I knew a 5 mm lesion on my hypothalamus gland, wasn’t normal. My 3rd MRI was done under anesthesia, but a Physcian’s Assistant said, “You were probably born with it,” and my hypothalamic lesion hasn’t meant anything to the doctors who have seen me. – It took time for me to realize that I have a moral responsibility to warn others. In my latest YouTube video, “Gabbing about Gabapentin,” I admitted doctors have labeled me as being “Psychogenic,” since that’s the popular diagnosis when an RX drug causes a permanent movement disorder.
Great article! Doctors do not want to believe their arsenal against disease could actually CAUSE disease and are mostly unwilling to believe, choosing instead to believe that the PATIENT is the problem. It is so very disheartening to get that look we all know when we dare to imply that it was the medication that did it or caused even a temporary adverse event. I am a surviving Lupron victim disabled now 18 years and counting and Still am not believed by a 99% of doctors! I wrote my story, Hormones Matter just printed last month and found it hard to condense small enough for people to actually read to the end because I wanted to bash the medical est. every single line I wrote. I urge anyone who has a adverse reaction, (especially) a long-lasting or permanent reaction to speak up LOUDLY to doctors and the FDA. Tell the doctors, don’t let them tell you. You know your own body, listen to it and scream!
Thank you, Lisa, for a great article that sums up exactly why adverse drug reactions are not reported by doctors or patients. I am currently recovering from metronidazole toxicity; it put me in the hospital for two days and left me debilitated for six weeks. I had a mental breakdown due to the effects and also the fact that NOT ONE SINGLE DOCTOR believed me when I told them it was the drug.
As I’ve gotten better, I’ve done a lot of research, and have learned that all my symptoms, including the slurred speech, difficulty walking, and “altered mental state” were all tall-tale signs of adverse effects of this drug. Basically, what happened was lesions formed on my brain. They are visible in 93% of people diagnosed with metronidazole toxicity, but because my doctors didn’t believe me, no MRI was taken. Luck for me, the lesions are reversible in the vast majority of patients.
I’m still struggling with some lingering problems, but I wanted to let you know that this article really spoke to me and the difficulties of being heard when doctors are blind to the adverse effects of the drugs they prescribe. Thank you!
I’m both glad and sorry that it resonated with you, Erin! I’m very sorry for all that you have been through! I’m glad that you are recovering and I hope that, with time, you make a complete recovery. The blindness of doctors to the serious and severe adverse effects of antibiotics is mind-boggling to me. How many articles about the importance of the microbiome, and the connections between antibiotics and the diseases of modernity need to come out before they realize that these drugs have consequences? For so long, physicians and patients alike have thought, “well, it can’t hurt” and have reached for the Rx pad for antibiotics. Unfortunately, antibiotics CAN hurt people. The least that can be done is to have some recognition of the adverse reactions when they occur.
I honestly didn’t know that metronidazole could cause brain lesions until I read your comment. If you are interested in telling your story, or sharing some research, or otherwise writing a post for this site, your input would be greatly appreciated! Here is a link with instructions on how you can write for HM, if you’re interested – http://www.hormonesmatter.com/write-for-hormones-matter/
Best regards,
Lisa
Hi, Lisa. Sorry for not responding sooner–I didn’t realize you had replied. Thank you for the kind words. I’m actually doing quite better, now a little over a year since my ADR to metronidazole (aka, Flagyl). Not 100%–fatigue, abrupt muscle weakness, and respiratory issues seem to be lingering. I tried biking this summer (something I did regularly before my ADR), and I can no longer do it. My symptoms flare up suddenly and then I can barely even walk my bike home. I’m lucky I have a desk job–if I worked in a factory, I’d probably would have been fired.
As I’ve talked to other victims of this drug, creating our own small network of contacts, it’s become apparent that a lot of other people are suffering due to this medication (although, as best as I can tell, the recovery from metronidazole toxicity seems to be better than getting floxed). In addition, I’ve read up on fluoroquinolone toxicity and stories from its victims, and the idea that this has been going on for 20+ years with little intervention from the FDA absolutely disgusts me.
I do have a blog for metronidazole victims; it’s at http://www.metrogirlblog.wordpress.com. It goes into more detail about side effects and the research I’ve uncovered. In addition, I’m also writing a book about my experience–before this happened, I was a professional staff writer, so maybe/hopefully, I might be able to get it published. If I can find the right agent/publisher who has the guts to do it.
Again, thank you for your kind words. Have a wonderful day, Lisa!