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.

What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

Why Autoimmune Patients with COVID-19 Should Beware of the Cytokine Storm

As the SARS-CoV-2 virus responsible for the COVID-19 disease continues to infect people and claim lives across the globe, scientists and medical professionals are learning more about its impact on patients.

One interesting phenomenon that’s been observed is that some coronavirus patients experience relatively mild to moderate symptoms, while others experience severe, life-threatening problems that can land them in the ER. According to Sharp Health News, the virus itself may not be entirely to blame for this, but rather, an overreaction by the body’s immune system.

When a foreign agent, such as a virus, invades your body, your immune cells secrete cytokines, which are molecules that initiate an immune response. However, in some cases, immune cells continue to secrete cytokines, even after a sufficient immune response has been mounted. This is called a ‘cytokine storm’ and the overproduction of these molecules can cause a harmful inflammatory response in the body.

Certain people are more susceptible to cytokine storms than others; for example, there is evidence that those with genetic mutations in their immune cells are more vulnerable. According to creakyjoints.org, those with autoimmune conditions often have abnormally high levels of these cytokines, which is why autoimmune patients often take immune-suppressing medications. However, a cytokine storm isn’t the same as an autoimmune disease flare, though they can be related.

As detailed by creakyjoints.org, some autoimmune patients end up with cytokine storms unrelated to COVID-19. Dr. Randy Cron, a pediatric rheumatologist and author of the book Cytokine Storm Syndrome commented, “About 10% of patients with juvenile idiopathic arthritis will experience [a cytokine storm]; in some cases, multiple times.”

With regards to COVID-19, which is respiratory in nature, a cytokine storm can gravely impact a patient. Acute lung injury (ALI) is a common consequence of a cytokine storm occurring in the lungs, and if a lung infection is severe, the inflammation will spread to the rest of the body via one’s blood circulation and cause sepsis. In some cases, the immune response to an infection can even be deadly.

That’s why it’s important to ‘calm the storm’ and prevent a cytokine storm before it even happens. One type of treatment being explored for COVID-19 is hydroxychloroquine, which is an antiviral and immunosuppressant drug used to treat malaria and autoimmune diseases like lupus, rheumatoid arthritis (RA) and Sjogren’s. Although the medication is still undergoing clinical trials, many are hopeful that this drug will serve as a treatment to halt the progression of COVID-19.

Besides pharmaceutical therapies, Sharp Health News cites curcumin, a compound found in turmeric, as beneficial for its anti-inflammatory properties. A 2015 study states that in lab experiments, researchers found that curcumin blocked the release of the cytokines that are responsible for inflammation.

All in all, it’s important for autoimmune patients to guard against the coronavirus by adhering to strict hygiene guidelines, such as hand washing thoroughly with soap and water, avoiding close contact with others, and disinfecting surfaces routinely. Remember, prevention is the best form of treatment, and can help those with autoimmune disease to avoid a damaging cytokine storm.