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Woman Alone in Forest

Medical Gaslighitng Causes Harm to Patients

Alma Lake

July 12, 2020

Medical Gaslighitng Causes Harm to Patients: Latest News

     Medical gaslighting is not a new issue but is being brought into the limelight because of the Covid-19 pandemic.  Long-standing gender, race, and socioeconomic bias in medical care and research, as well as a system that teachers medical professionals “to discount patient symptoms (Moss),” continue to contribute to detrimental outcomes for patients with an increase of medical gaslighting.  One would think that when a 14-year-old teenage boy who had lost 40 pounds, was throwing up multiple times per day for months, and could not keep his food down would be a serious situation for doctors to address. It was for his parents who struggled to find their son help by taking him to many doctors, the ER multiple times, and was hospitalized multiple times.  Nothing showed up on any tests completed by his doctors so they told his mother that it was “all in his head.”  Doctors insisted that he must be suffering from anxiety, depression, and had a desire to die. She knew they were completely wrong.  Being told this was devastating and left her feeling hopeless. Her son was slowly dying in front of her eyes and the doctors wanted him to see a therapist.  

     This mother took to social media asking if anyone had heard of what her son was experiencing? Thankfully someone did. A friend of hers put her in touch with a family member with a rare disease that sounded similar to what her son was going through.  Another friend shared information on a doctor that they had used that would keep digging for answers. He was finally diagnosed with a rare disease, and doctors are now working to figure out the other pieces of the puzzle.  While his illness was severe, the doctor’s reactions and dismissal are more common than you can imagine.  How do a mother and her seriously ill son get dismissed in the Utah medical system that ranks at 11 in the United States for having quality health care (Ziegler, 2021)?  The problem of medical gaslighting is being brought to the forefront once again by the influx of many patients during the Covid-19 pandemic with this unfamiliar illness as well as the post-Covid-19 “Long Haul” illnesses.  The journey of my 9-year-old son into Long Haul Covid dragged me once again into the face of medical gaslighting. Three weeks after the initial infection he suddenly lost his ability to walk, had severe nausea and migraines. His symptoms progressed quickly daily for weeks and worsened over the many months that followed.      His constant hand tremors turned into leg tremors, which progressed to full body tremors. His neurologists returned my call one day, to quickly inform me that it was anxiety he was experiencing and he should see a “therapist right away.”  At that moment I had a choice to make.  Either end the call and find another doctor who could help my son, or have a more in-depth conversation with my neurologists and hope that I could bring more understanding to the situation.  

     Prior experience from 21 years ago, told me that I needed to at least try to help this neurologist gain more insight into what his quick inaccurate diagnosis would mean to my son.  He spent some time on the phone with me while I explained what anxiety does not look like. Anxiety did not look like a laughing happy boy resting on the couch playing video games with his siblings while his body was uncontrollably shaking with tremors.  I let the doctor know that I did not expect him to have all the answers today, but that I did expect him to help us find the answers.  I also let him know that I was not expecting a quick-fix pill for what was happening or to have an overnight miracle to make my son whole, but I expected his doctors to look for and try to find answers and ways to help my son. This conversation allowed the doctor to pause and re-evaluate his diagnosis. Together we came up with a short-term plan. Inadequate in the face of things, but not a complete copout either.  I was fortunate to be able to pull my doctor slightly back from the medical gaslighting abyss.

Medical Gaslighitng Causes Harm to Patients: Text
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Physical Therapy

Needing physical and occupational therapy after going into Long Covid and getting Ataxia which caused damage to the brain and nervous system. The harness helps to lift a portion of his body weight and keeps him from falling so that he can practice walking.

Medical Gaslighitng Causes Harm to Patients: Image

      Covid-19 Long Haul is not the only illness that patients have experienced medical gaslighting from. Unfortunately, the list of illnesses is long.  In one study we find that  “despite severe symptom levels that leave approximately 25% of patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) housebound, many patients report a lack of support from their health care providers (McManimen et al. 252).”  The study found that 77% of patients “reported experiencing a negative interaction with a healthcare professional,” and “found that 57% reported being treated poorly by their doctors (McManimen et al. 252).”  This type of negative interaction between patients and doctors is called medical gaslighting.  

     Medical gaslighting is not a new phenomenon and has been going on for centuries.  We know that “historically, women have always been pegged “hysterical” and “mental” by men and the predominantly patriarchal medical profession (Moss).” Unfortunately, medical gaslighting can take on many different forms.  Medical gaslighting often includes manipulating a patient into thinking that they are exaggerating their own condition. This puts patient’s “well-being or even their lives at risk (Moss).“  My first experience with medical gaslighting was 21 years ago when giving birth to my second child.  The nurse wanted me to get an epidural, but this procedure was deemed unsafe for me during my first child’s delivery by the anesthesiologists attending the birth.  It could lead to me being paralyzed.  I informed her I would not be having this procedure and would instead have a heparin IV lock just in case they needed to do an emergency c-section.  She proceeded to belittle me and attack me by saying that I was “harming my baby by not getting one.”  In the months leading up to this delivery, I had learned that you can fire your medical personnel even while laboring.  I proceeded to do this on the spot.  I told her that she was not allowed back into my room until my doctor arrived. She did not return until my doctor arrived. The doctor supported me in my position and then proceeded to dismiss her from my care as well.  A win for my safety.

     A study by McManimen in 2019 found five common main themes in medical gaslighting: Disbelief, Inappropriate Causes, Inappropriate Treatments, Insensitivity, and Lack of Knowledge (252). They found that doctors would often attribute a patient's symptoms to depression.  When laboratory tests were inconclusive and no exact cause was found at the location of concern, the doctors would point to a “psychological diagnosis to explain patient symptom experiences (McManimen et al. 252).”  Author Maya Dusenbery shares what a member of the board of the American Autoimmune Related Diseases Association has said, “mental health professionals were often the first to make a correct diagnosis of autoimmune disease; after all, psychiatrists lack the incentive that other physicians have to treat their field as a dumping ground for irritating women and their unidentifiable problems (Haas).”  This clearly shows the bad track record medical doctors have. 

     Why is there this persistent problem in the medical field and what can be done? Organizations, doctors, and research are helping to bring to light reasons why medical gaslighting happens.  One of the first things contributing to this problem is the knowledge gap. Many drugs used today have not been adequately tested on women.  Historically, in 1977, the FDA issued a policy recommending the “exclusion of all women of childbearing age from all clinical research (Wilsky).” In the 1980s, many large foundational clinical studies were done on thousands of men and no women. The assumption was that there were “not many differences between the sexes beyond reproductive organs and that it was fine to extrapolate male results to the female population (Wilsky).” Another reason, not as readily acknowledged by medical professionals, is that a study is made more complicated with women in them.  Women’s hormones make them “more different than each other as a group of subjects (Wilsky).” Dansbury calls it “lazy medicine (Wilsky).”  

Medical Gaslighitng Causes Harm to Patients: Text
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Medical Gaslighitng Causes Harm to Patients: Image

     In the 1990s there was a public outcry and changes were supposed to be made to new studies. More recent studies showed that this did not happen as much as is needed. A 2007 study in the Journal of Women's Health found that just 24 percent of participants in 46 drug trials from 2004 were women (Geller et al. 1127).  Another study that was completed in 2011 found that the “median enrollment of women in federally funded 2009 clinical trials in nine medical journals was 37 percent—the same as it had been five years prior (Geller, Koch, et al. 317).”  To help give perspective on how studies are skewed take a look at PMS symptoms.  While 90 percent of women report experiencing at least one PMS symptom, “five times as many studies have been dedicated to erectile dysfunction, a problem experienced by 19 percent of men (Weiss).”

     A second contributing factor to medical gaslighting is that doctors are afraid.  Being responsible for the lives of sick patients can be a scary thing.  Dr. Jones shared in an article that “our fear of failing to know everything we ‘should’ causes many of us to hide behind a veil of toughness. Arrogance is often just a cover for vulnerability, and with so much information that we’re expected to digest, we are at risk for making a bad decision if we aren’t up to date (“Condescending Doctors and How to Deal With Them”).”  Dr. Jones goes on to talk about how the competitiveness of getting into medical school contributes.  Most successful pre-med students are “generally type A personalities with a fierce competitive nature (“Condescending Doctors and How to Deal With Them”).”  Another problem he mentions is physician fatigue.  He goes on to say, “one study even found that nearly 1 in 2 physicians in the US report at least 1 symptom of job burnout. Of course, sleep-deprived people are more likely to be irritable, short-tempered, impulsive, grandiose, and hostile—a.k.a. Jerks (Sifferlin).”  

     One way to help overcome medical gaslighting is making doctors more aware of when it occurs.  Doctors may give an inaccurate diagnosis but rarely find out about it. The patient leaves their office and decides to not go back.  They end up finding a different doctor who gives an accurate diagnosis and treatment. The earlier doctor never finds out his diagnosis was wrong.  Finding ways to give doctors accurate and better feedback would go a long way to eliminating this pervasive problem.  Helping doctors to become aware of their diagnostic mistakes, gives them the feedback to make better judgments in the future.  Post clinical care surveys that allow this type of feedback are critical for beginning to help improve things.  It’s important to fill out the surveys sent to you.  When appropriate, send emails letting the doctors know of the mistakes or leaving reviews of bad doctor behaviors.  Many doctors at clinics and hospitals have managers over them.  Reaching out to those managers can help to work to solve this issue.  

     The persistence of medical gaslighting in patient care and research is detrimental to patients receiving adequate care. We need to demand better research that includes more representative samples. We need educational institutions to look at how their pre-med education programs are structured and what these students are being taught so that they can become better doctors. As patients, we need to be willing to be open about this problem.  If we do not it will be difficult to make changes. Patients need to share their concerns.  All large hospitals have patient advocates that you can bring your concerns. Their job is to help you resolve these problems. I had to reach out to one to get the neurologists to return the calls that I mentioned earlier. We also need to become advocates for ourselves when it comes to health care.  When the mother shared her story about her son, she was extremely embarrassed, blaming herself for being such a terrible parent and messing up her son. She did not cause this medical disaster.  Thankfully she was persistent and willing to let others know what was happening. This opened the door to finally getting the answers they needed and her son being on the road to recovery.

Medical Gaslighitng Causes Harm to Patients: Text

Types of Medical Gaslighting

Inapproprate treatments, inappropriate cuases, insensitivy, disbelief and lack of knowledge can all lead to medical gaslighting.  Becoming aware of what it can look like will you knowledge to stop it from continueing.

Mimimizing Debilitating or Dangerous Symptoms

"Your pain can't be that bad."

Assuming a Diagnosis Based on Sex, Race, Identity, Age, Gender, Ethnicity, or Weight

"If you lost weight, your symptoms would disappear."

Blaming Symptoms On Mental Illness

"It's all in your head."

Refusings to Order Important Tests or Imaging Work

"I know you don't have 'XYZ,' I do not need MRI to tell me this.  I know how to do my job."

Refusing to Discuss the Health Issues With the Patient.

"You are fine. There is nothing more to discuss."

Berating Patients For Trying to Self-Diagnose

"Who's the doctor here, me or Google?"

Medical Gaslighitng Causes Harm to Patients: List
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