What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.

Is This Illness Related to COVID-19 Autoimmune?

Healthcare professionals are grappling with the effects of pediatric multisystem inflammatory syndrome (MICS), a complication of COVID-19 in children

Across the world, disturbing reports are coming through detailing a new complication thought to be related to COVID-19 that is affecting children with the virus. The illness, called pediatric multisystem inflammatory syndrome, or MICS for short, causes the immune system to overreact, leading to dangerously high levels of inflammation throughout the body. It impacts the body’s major organs, including the heart, liver, and kidneys, among other parts of the body.

Juliet Daly, a 12-year old girl from Louisiana, was diagnosed with both COVID-19 and MICS after going through cardiac arrest. Thankfully, she was airlifted to a children’s hospital, where she was put on a ventilator until she could breath on her own and her heart and other organs had recovered.

Juliet Daly was diagnosed with COVID-19 and pediatric multisystem inflammatory syndrome after being admitted to the hospital. Image courtesy of CNN.

Pediatric multisystem inflammatory sundrome has been compared to Kawasaki disease, an inflammatory condition primarily found in children under age five that impacts the heart’s coronary arteries. Kawsaki disease can lead to complications like artery enlargement, aneurysms, issues with the lymph nodes, skin, and the lining of the nose, throat and mouth. Some experts hypothesize that the coronavirus could be a trigger for Kawasaki disease. A recent study done in Bergamo, Italy found that the incidence of a ‘severe, Kawasaki-like disease’ increased 30-fold after the virus broke out in the region, further supporting this theory.

Pediatric multisystem inflammatory syndrome also bears the hallmarks of a cytokine storm, a phenomenon in which the body’s immune system overreacts to the virus and mounts a harmful inflammatory response in the body.

This raises the question, is MICS autoimmune in nature? While little is known about the condition, Dr. Randall Williams, Director of the Missouri Department of Health and Senior Services, said during a recent press conference that the condition is an “autoimmune reaction“, and that “it’s basically where your body reacts to an antigen and starts attacking itself.”

The relationship between viruses and autoimmune disease has been studied in the past. For example, studies have found a link between the Epstein-Barr virus (EBV) and the pathogenesis of a number of autoimmune diseases including lupus, multiple sclerosis, rheumatoid arthritis, juvenile idiopathic arthritis, inflammatory bowel disease, type 1 diabetes, and celiac disease.

Though there isn’t a cure for MICS, it’s treated by giving patients steroid and intravenous medications commonly issued to patients with an autoimmune disease, in an effort to decrease damaging inflammation.

While the coronavirus has proven to be less common and less deadly in children than adults, two young children and a teen with COVID-19 who showed Kawasaki disease symptoms have died in the state of New York. As a result, parents are advised to take precautions and contact their pediatrician or family medicine provider if your child has a fever to determine the best next steps.

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Autoimmune Disease on the Rise in the United States

An April 2020 study published in Arthritis and Rheumatology suggests that autoimmune disease is on the rise in the United States.

In the study, researchers found that the prevalence of the most common biomarkers of autoimmune disease, called antinuclear antibodies (ANAs), is significantly increasing in the U.S. overall as well as among certain populations. These affected populations include:

  • Men
  • Non-Hispanic whites
  • Adolescents
  • Adults 50 year and older

The researchers examined over 14,000 patients ages 12 and up over the course of three time periods spanning 30 years. In this time frame, they discovered that the overall frequency of ANAs in their test subjects went from 11% affected individuals to almost 16% affected. The worst affected population was the adolescent group, who experienced a nearly three-fold increase in ANA rates over the course of the study period.

While the exact cause of autoimmune disease remains unknown, many scientists believe that a combination of genetic and environmental factors is responsible. However, the researchers in the study state that because people have not changed much genetically over the past 30 years, it is more likely that lifestyle or environmental factors are responsible for the ANA increases.

Christine Parks, PhD, is one of the researchers involved in the study who focuses on the environmental causes of rheumatoid arthritis (RA) and other autoimmune diseases. “These new findings…will help us design studies to better understand why some people develop autoimmune diseases,” she said. She also added that there are over 100 chronic, debilitating autoimmune conditions that could stand to benefit from further research.

Donna Jackson Nakazawa, a Maryland-based science journalist and author of the book The Autoimmune Epidemic, believes that our ever-increasing exposure to chemicals, heavy metals, and viruses, coupled with stress, dietary and other lifestyle factors, is primarily to blame for the increase in autoimmune disease. She also points out that there may be a connection between autoimmune disease and allergies, which are also skyrocketing.

Nakazawa herself suffers from Guillain-Barre Syndrome, a paralyzing autoimmune disease similar to multiple sclerosis (MS). In her latest book, The Last Best Cure, she states that experts predict that the number of Americans who suffer from chronic conditions will rise an astonishing 37% by 2030.

While this may not sound like positive news, one good thing is that with an increase in autoimmune disease, more scientists, medical professionals and pharmaceutical companies will be encouraged to undertake research to find treatments and, ultimately, a cure for autoimmunity. I personally am hopeful that we will see enormous strides in biotechnology in my lifetime.

Are you surprised by the increase in autoimmune disease in the U.S.? Let us know in the comments below!