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.

8-Year-Old Who Died from Autoimmune Diseases Leaves Legacy List of Rules

Ellie Pruitt was an 8-year-old girl who left a legacy of wisdom after passing from autoimmune diseases

Ellie Pruitt was an 8-year-old girl from Canton, Georgia, who passed away from various autoimmune diseases.

When Ellie was just three years old, she began to complain of pains in her legs and fatigue. Ellie’s parents took her to a Pediatric Rheumatologist who confirmed that she had juvenile rheumatoid arthritis, an autoimmune condition causing painful inflammation in the joints. She took steroids and received injections of methotrexate, a disease-modifying anti-rheumatic drug designed to reduce the inflammation.

During Ellie’s short lifetime, she participated in medical studies to determine what causes autoimmune disease. Both of her parents, Heather and Chuck Pruitt, have autoimmune conditions themselves; Heather was diagnosed with type 1 diabetes when she was a college senior, and Chuck was diagnosed with lupus at age 15.

In addition to the medical studies, Ellie and her family participated in the Walk to Cure Arthritis. They formed a team of families representing four children with the condition, called the Woodstock Warriors Against Juvenile Arthritis. Their team raised more than $5,000 for the cause.

Ellie participated in the Walk to Cure Arthritis with her family

After Ellie passed away on February 6th, her parents found a list of ‘rules to live by‘ that she had written. The rules were: 1) Have fun 2) No fighting 3) No pushing, shoving or hitting, and 4) Always love. After her parents found the list of rules, they decided to share it with her classmates to help comfort them after her passing.

Ellie Pruitt’s list of rules to live by

“It’s amazing that an 8-year-old little girl knew what we should focus on,” her mother Heather Pruitt said. “She started [rule] number 5, but erased it, because she knew that’s the greatest…If you can do all those things, you’re going to be in good shape.”

As a tribute to young Ellie’s wisdom, her hometown decided to display her list of rules in various places around their community. Local businesses like Bruster’s and Chick-fil-A displayed rules 1 and 4 on signage outside their stores.

Chick-fil-A displays a sign with two of Ellie’s rules on it

According to Ellie’s obituary, she was very artistic and loved to do crafts, draw, and paint. She was also a dancer and a musician (she played the piano). Her favorite places were school, church and the beach.

If you enjoyed reading about Ellie’s story, please don’t forget to like, share and comment below! Also, subscribe for more autoimmune disease news.

Could the secret to chronic pain relief lie in the memories stored in your body and mind?

A woman undergoes EMDR therapy by a licensed practitioner.

It is clear that stress can have a direct impact on autoimmune, chronic pain and other health conditions. Autoimmune Warrior shares research on the role of chronic stress in autoimmune disorders in this blog post. However, the nuances regarding the types of stress and how to deal with them are not often something we talk about with a medical physician, or to anyone in general.

The body and mind are inherently connected and emotional stressors can and do impact our physical functioning. Beyond everyday stressors, traumatic events, whether they occurred long, long ago in your early childhood, or something you experienced this year can get stored in your body and can manifest in the form of stomachaches, back and joint pain, or chronic migraines, to name a few. Everyday stressors may refer to issues with setting boundaries with a family member, difficulty speaking up for your needs, or putting your needs last ahead of everyone else.

The effects of emotional stress and trauma on the body’s hormonal functioning and immune system are well researched. Dr. Gabor Mate, a Hungarian physician who has investigated for many years the potential psychological attributes to his patients’ physical illnesses, including breast cancer, ALS and intestinal issues, has found commonalities in his patients dealing with similar health issues. He found links between those who experienced childhood abuse, neglect and/or maintaining unhelpful relational roles and those who had chronic health issues. These connections are described in his book, When the Body Says No.

Stress and trauma impact hormone functioning. Specifically, research has found that cortisol, a critical hormone implicated in managing stress responses, is impacted by traumatic experiences. For example, decreased cortisol levels have been found in women who have a history of childhood sexual abuse and Post Traumatic Stress Disorder (PTSD). This change in cortisol level functioning can impact the immune system (Kloet et al., 2006), as healthy levels of cortisol help to regulate inflammatory response and glucose levels. When too much cortisol is released from the body, it constantly feels as if it is in fight or flight mode (whether it’s a real or perceived threat), which can inhibit the regulation of glucose levels and responses to attacks on the immune system. Click here for more information.

Furthermore, the ACEs (Adverse Childhood Experiences) study conducted by Kaiser, found that the more adverse childhood events you have had, the higher at risk you may be for certain health conditions such as heart disease, breast cancer and diabetes. For more information on ACEs, read Autoimmune Warrior’s blog post. Additionally, click here to find out what your ACE score is.

So what does this all mean? It means that help in the form of psychological healing may positively impact your physical health and decrease the chronic pain. Addressing long-avoided emotional pain from past trauma can (and does!) help. If you are thinking to yourself “I didn’t experience trauma!” but you wonder why those boundaries are so hard to set, you feel guilty if you don’t take care of your parents’ emotional or physical needs, or you’re avoiding social situations (just a few examples), chances are there’s something from your past that may be keeping you from living an emotionally and physically healthier life today. There are many options for helping you in this area, particularly forms of body-based psychotherapy models that can be effective with chronic pain, including EMDR therapy.

EMDR (Eye Movement Desensitization Reprocessing) therapy uses bilateral stimulation in the form of eye movements or alternative tapping to activate memory networks which are linked to maladaptive functioning; in other words, it activates the traumatic memories that are linked to negative feelings and beliefs that we have about ourselves now (for example, having low self-esteem, triggers to not feeling safe when you know logically that you are). During a REM sleep cycle your eyes move back and forth as you process the day’s events. In the same way, bringing up those past memories with eye movements in a safe, controlled environment with a skilled EMDR therapist helps the brain process through the memory and come to a more adaptive resolution. It allows the brain the space and time to do what it couldn’t do at the time that event occurred—process. And that can help remove self-blame or other negative beliefs, and in turn, relieves symptoms of anxiety, depression and PTSD, to name a few. With the relief of mental health symptoms, there is less stress on your immune system and this can improve overall pain symptoms and your energy level. To learn more about EMDR therapy, visit www.EMDRIA.org.

As Bessel van der Kolk suggests, The Body Keeps the Score, so let’s not forget to consider what has happened (or is happening!) in your life which may be contributing to your autoimmune symptoms.

Brooke Bender is a licensed Marriage and Family Therapist and Board Certified Art Therapist, as well as an EMDR certified therapist practicing near Los Angeles, California. For more about Brooke, please visit: www.brookebender.com