Medical Gaslighting: Multiple Sclerosis’ Dirty Little Secret?

Publication
Article
NeurologyLiveNovember 2023
Volume 6
Issue 6

The effect of gaslighting on patients can result in serious harms, and although it is potentially common in the MS care continuum, whether it is deliberate or an institutional problem, it must be called out by providers.

Rachel Horne, Department of Preventive Neurology, Wolfson Institute of Preventive Medicine, Queen Mary University of London, in the United Kingdom

Rachel Horne

Süleyman Güler, MD, Department of Neurology, Şanlıurfa Training and Research Hospital, in Turkey

Süleyman Güler, MD

The Patient Perspective

Jay Gee, now aged 46 years, had known something was wrong for decades. Since they were a teenager, Gee was mostly bedbound with fatigue, nausea, incontinence, numbness, difficulty walking, and vision problems.

But no health care professionals (HCPs) would listen to Gee, who identifies as nonbinary, including the physicians in the north of England who said their symptoms were “all in their head” and the psychologist who tried to section them. Gee received a diagnosis of chronic fatigue syndrome and was prescribed antidepressants and a course of cognitive behavioral therapy.

Finally, Gee had enough. After researching online and acquiring a new credit card, they paid to see a neurologist privately, who took a detailed medical history and ordered tests, including an MRI. The neurologist confirmed what Gee had long suspected: They had multiple sclerosis (MS) with significant cerebral atrophy. They have been treated with alemtuzumab.

Gee’s experience has left them traumatized, scarred, and angry. “It hurts every second of every day to think how much of my brain health professionals stole from me,” they say.

Gee now knows they were a victim of medical gaslighting, a term used for when HCPs downplay, dismiss, or ignore a patient’s symptoms or wrongly blame their concerns on psychological factors.1 At best, it can cause a person to leave their physician’s office feeling frustrated, confused, or full of self-doubt.2 At worst, it can cause a delay in a patient receiving the correct diagnosis and treatment, which can lead to irreversible damage.3,4 We believe gaslighting disproportionately affects individuals with MS, and thus, it is key to address. In this article, we offer ways for patients to avoid it because the consequences can be so severe.

“Medical gaslighting happens quite often in MS,” Mitzi Joi Williams, MD, a neurologist with a practice in Smyrna, Georgia, says. “It most commonly occurs during the process of diagnosis but can also occur when symptoms are worsening, and there is a delay in escalating a patient to more effective treatments.”

Origins

The term gaslighting comes from the 1938 play-turned-film Gaslight, which tells of a husband’s manipulative attempts to drive his wife insane so he can commit her to a mental institution and steal her inheritance. During the 1960s, the word began to appear in psychological literature5 to describe emotional abuse in intimate relationships.

Mitzi Joi Williams, MD, Joi Life Wellness Group, in Smyrna, Georgia, United States

Mitzi Joi Williams, MD

Gavin Giovannoni, MBBCh, PhD, FCP, FRCP, FRCPath, Department of Neuroscience, Blizard Institute, Queen Mary University of London

Gavin Giovannoni, MBBCh, PhD, FCP, FRCP, FRCPath

Recently, the phenomenon of gaslighting has been attracting attention in the general public. The US dictionary Merriam-Webster chose it as its word of the year in 2022.6 It has crossed over to medicine in the past decade to refer to a physician trivializing or downplaying a patient’s health concerns.7 HCPs may be unaware of the term medical gaslighting, although some may have come across it in recent articles, such as one published in the British Medical Journal (BMJ).8

We suspect this health care bias has long occurred, but it has only recently become a focus of attention because individuals are using social media to call it out. For example, those with MS who believe their symptoms have been inappropriately dismissed have used hashtags such as #medicalgaslighting and #PatientsAreNotFaking to post their experiences on platforms such as Instagram and TikTok.9 In addition, in recent years, celebrities have also been going public with their MS stories, including their encounters with medical gaslighting.10

One such celebrity is Selma Blair, who writes in her book Mean Baby that she endured MS symptoms for decades but was never taken seriously by physicians “who blamed hormones, depression, anxiety, exhaustion, malnutrition, [and] my ‘neurasthenic’ nature. One doctor went so far as to tell me I might feel better if I had a boyfriend.”

Medical gaslighting can happen to anyone, but it overwhelmingly affects women,11 particularly women from racial and ethnic minority groups.12 Women may receive a misdiagnosis more often because research into diseases that affect women has consistently been marginalized and underfunded.13

We also know women and racial and ethnic minority individuals often wait longer to receive a diagnosis of heart disease and cancer and are treated less aggressively for chronic pain14 and traumatic brain injury.15 In addition, research shows women from racial and ethnic minority groups, women with disabilities, older women, or women with lower socioeconomic status also receive lower-quality health care, according to Melinda Wenner Moyer in her recent piece in The New York Times.16

Double Whammy

That brings us to MS. We cannot point to any specific study findings or statistics, but we believe medical gaslighting is a pervasive problem in MS for 2 reasons. MS is a disease that, as is common with many autoimmune conditions, largely affects women,17 who have been victims of medical gaslighting historically. Add to this that MS is a notoriously tricky disease to diagnose and manage.18 Presently, there is no single biomarker to confirm an individual has MS, so it often takes dedicated medical sleuthing on the part of a neurologist to determine a diagnosis.

An MRI scan may show the presence of lesions and the need for spinal fluid testing, whereas a lumbar puncture can point to immune system activity around the brain and spinal cord. But neither of these is definitive.

Another hurdle is that MS symptoms vary from person to person; they wax and wane over time, and many are invisible (eg, fatigue, pain, anxiety, cognitive dysfunction), meaning they are difficult to measure and manage. In addition, many other neurological conditions mimic MS, including migraine, cerebral small vessel disease, systemic lupus erythematosus, or autoimmune conditions such as neuromyelitis optica.

Not surprisingly, mistakes happen in diagnosis. Results from a recent study found that nearly 1 in 5 individuals who received a diagnosis of MS should have received an alternative diagnosis.19

Why Now?

click to enlarge

click to enlarge

In the hopes of learning more about the intersection of MS and gaslighting, Gavin Giovannoni, MBBCh, PhD, FCP, FRCP, FRCPath, chair of neurology at the Blizard Institute of Cell and Molecular Science at Barts and the London School of Medicine and Dentistry at Queen Mary University of London in the United Kingdom, conducted a short online survey using his MS-Selfie newsletter and website to ask patients whether their MS-related symptoms or problems had been ignored or whether they had experienced medical gaslighting (TABLE).20,21 The survey was conducted using Google Forms and collected 424 responses between August 22, 2022, and August 29, 2022.20,21 Of the respondents, 88% reported they had experienced medical gaslighting, with 47% saying it occurred at least frequently (ie, annually) and 41% saying it was infrequent. Women with MS were significantly more affected by medical gaslighting than men, with more than half of responding women reporting that it occurred frequently.

Results from the survey found that medical gaslighting occurred at all stages of the disease but was particularly common before diagnosis. This was not surprising because of the misinterpretation of symptoms, possibly in the MS prodrome, which is well described in the literature.22-26 Medical gaslighting appeared to be unrelated to age in the survey when analyzed by decade (data not shown).20,21

Also worth noting is that neurologists were overwhelmingly the most frequent group of medical professionals (77%) responsible for gaslighting.20,21 This was followed by family physicians or general practitioners (51%) and MS nurse specialists (33%).

What differentiates the neurology professionals from others is that they are responsible for taking a patient’s medical history and carrying out a neurological examination before interpreting and commenting on relevant symptoms and signs. This gives them a greater opportunity to ignore, trivialize, or dismiss symptoms, which is likely to be interpreted as medical gaslighting by patients with MS.

The survey results have some limitations. They are likely to be biased and not representative of the general population with MS. Individuals with MS who subscribe to MS-Selfie are almost certainly more self-selecting, more informed, more proactive about self-managing their MS, and potentially more likely to have been gaslighted in the past.

Despite this, the results cannot be ignored and neither can the personal stories in the comments section,20,21 which show how pervasive and serious the problem of medical gaslighting is in the field of MS. It particularly suggests that gaslighting is rooted in a power dynamic, with medical professionals keen to remain in control of the narrative.

We believe physicians are not intentionally trying to gaslight their patients. Some may not even be conscious of it. They often work under demanding conditions, with little time and limited resources, and are called to make challenging diagnoses and decisions.

As such, the subtlety of gaslighting can be difficult to recognize. What should patients look for to avoid medical gaslighting? Here are some potential signs of gaslighting27-29:

  • Your HCP does not engage or listen to you or continuously interrupts you.
  • Your HCP does not write down your concerns or ask follow-up questions or rushes you through your visit.
  • Your HCP will not make a referral or order relevant imaging or laboratory work.
  • Your HCP blames you for your symptoms, pointing to obesity or stress, or suggests they are psychological.
  • Your HCP is rude, condescending, or belittling.

As advocates for individuals with MS, we propose they do the following to prevent it:

  • Push back. Women may want to consider pushing back, advocating for themselves more, and being less of a so-called “good patient.” Men, for example, tend to be more vocal and more persistent with their concerns.30
  • Prepare for medical visits. Keep a journal listing any changes in your symptoms between appointments. “For example, if you have severe fatigue, mention how that [affects] you. For example, you might say, ‘Usually I can do this, but for the past 3 months, I can’t,’” Williams says.
  • Ask to record the consultation. Your HCP may not agree to this, but it’s becoming more common.30,31 Plus, it may change the HCP’s behavior and reduce medical gaslighting.
  • Bring along a care partner to give you emotional support. “Someone who knows you well can help validate your concerns and reiterate them if they’re being dismissed,” Stacey Rosen, MD, senior vice president for Northwell Health’s Katz Institute for Women’s Health, says.32
  • Focus on the key issues. The United Kingdom’s average follow-up consultation time with a neurologist is 15 minutes.33 Come up with a list of questions and concerns that are the most pressing.
  • Pin down the next steps. Ideally, you should leave your appointment knowing what is happening next regarding planned investigations, treatment changes, blood test results, etc.
    • If you still feel you are being ignored, consider seeking a second opinion and potentially switch to a new HCP or MS service.

Key Takeaways

  1. Awareness of Medical Gaslighting: Recognize the existence and impact of medical gaslighting in the MS community, acknowledging its potential to hinder accurate diagnosis and timely treatment.
  2. Patient Empowerment: Understand the prevalence of medical gaslighting, especially among women with MS, and empower yourself by proactively addressing concerns, preparing for medical visits, and seeking support to navigate potential dismissals or delays in care.
  3. Advocacy and Change: Advocate for change within healthcare practices by encouraging open communication, recording consultations, seeking second opinions, and fostering a partnership-based approach between patients and healthcare providers. Additionally, support further research on medical gaslighting in MS to address and reduce health inequalities.
  • Appeal to a higher authority. The United Kingdom’s National Health Service, for example, has a dedicated system called the Patient Advice and Liaison Service for formal complaints and a system for dealing with them.34 In the United States, the US Department of Health & Human Services offers a list of resources for patients seeking to file complaints.35
  • Look to support groups. Many MS societies and charities have helplines you can use to discuss these issues.
  • File a report. These are potentially reportable events that HCPs need to know about.
  • Change your health care provider. This may take some time, but remember it is for the betterment of your health.

We hope this commentary acts as a catalyst to make health professionals more aware of how their unconscious beliefs and hidden biases may influence their perceptions, judgments, and actions when it comes to their patients. We also hope it leads to more studies about medical gaslighting in MS—specifically how it affects the diagnosis and management of the disease, especially in vulnerable groups, and how it can lead to greater health inequalities. We also need to ensure medical schools spend enough time teaching their students about women’s health and about differences in how conditions can present depending on gender.

Physicians are experts in medicine, but patients are their own experts.36 We need to remember the best physician/patient relationship is based on partnership, not paternalism.

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