Unseen Pain: Medical Gaslighting in Chronic Illness
We’re coming out of Halloween and wrapping up Dysautonomia Awareness Month. That’s why it felt fitting to talk about a scary reality that so many on a journey with chronic health issues face… Medical gaslighting.
When I started working with patients with POTS, MCAS, EDS, and chronic pain at the USC Occupational Therapy Faculty Practice, I could not believe the stories I heard from people about their experiences with the medical system. Doctors who consistently downplayed symptoms as anxiety, doctors who shrugged their shoulders at complexity and labeled it “psychosomatic,” and ER visits where a patient heading toward anaphylaxis was given sedatives and a psych evaluation rather than appropriate treatment for an MCAS flare.
It was enough to make my blood boil… and it lit a fire in me to be a different kind of healthcare provider. One who advocates and lifts up the voices of people living with invisible and chronic health conditions that are often misunderstood. This desire to improve quality care and fill in the gap of missing services that can improve quality of life for people living with POTS and other invisible illnesses is the reason I’m so passionate about providing person-centered, trauma informed occupational therapy.
What is medical gaslighting? Why does it occur?
Gaslighting is a form of emotional abuse and manipulation where someone is made to question their beliefs, reality, judgment, or memories. Gaslighting can occur in relationships with significant others and with friends, family members, co-workers, and more.
Medical gaslighting happens when a healthcare provider dismisses or downplays your concerns to the point where you question your own experience. Medical gaslighting might look like not believing your reported symptoms, not taking your complaints seriously, and/or writing off physical symptoms as mental health issues or labeling them “psychosomatic.”
Medical gaslighting is often not caused by an intent to harm on the part of individual doctors, but rather systemic issues in our healthcare system. Some of these issues include unchecked implicit biases which might impact how a provider views their patient. These unchecked implicit biases lead to medical gaslighting happening far more often to women and BIPOC individuals. It also stems from a lack of knowledge about conditions, such as POTS, MCAS, or EDS. A 2021 article revealed significant gender disparities in how the US National Institutes of Health funded research. Research on medical issues and diseases predominantly affecting men were overfunded while diseases that predominantly impact women were underfunded. This can contribute to lesser knowledge on women’s health issues and/or conditions that affect more women than men (lookin’ at you POTS).
What is the impact of medical gaslighting?
Even if individual doctors are not intending to cause harm, medical gaslighting can have severe consequences when you are already dealing with the burden of chronic illness.
Delayed Diagnosis: When doctors dismiss or downplay symptoms, it can lead to a delayed diagnosis, which is particularly damaging for conditions that require early intervention for better outcomes. This 2022 article describes how rampant gaslighting of long-COVID patients impacted diagnosis and treatment.
Inadequate Treatment: Medical gaslighting often results in inadequate treatment or a lack of appropriate referrals to specialists. Patients are left without the care they need to manage their symptoms effectively.
Emotional Distress: Constant invalidation of one's pain and suffering can lead to feelings of anxiety, depression, and hopelessness, exacerbating the emotional toll of chronic illness.
Self-Doubt: Over time, patients may start to doubt their own experiences, which can lead to a loss of self-trust and exacerbate their suffering. I have seen how this also impacts they way patients report their symptoms to providers
Worsening Symptoms: The stress and anxiety caused by medical gaslighting can actually make symptoms worse. Stress can be a trigger for many chronic illnesses, including POTS, making the situation even more challenging.
Tips for coping with medical gaslighting:
Trust your instincts. Remember that you ARE the expert on your own body. If you feel that something is wrong, don't be afraid to seek a second opinion or advocate for further testing. Your voice, your experience, and your story are important even if they have been ignored, twisted, or used against you in the past.
Find the right healthcare team. It’s worth the time and effort. If you have a horrible feeling about how you were treated in a medical appointment, you have the right to not continue working with that person. You have the right to assemble the right healthcare team for you.
Have back up during appointments. Writing down a list of questions or concerns prior to an appointment can help you make sure you get what you need. Bringing a trusted friend or family member with you to appointments so they can back you up if needed.
Build assertive communication skills to advocate for yourself. Don’t be afraid to speak up for yourself. Ask the questions, request further explanation, testing, or referrals. Assertive communication is a skill that can be developed and practiced and is a common thing I support my patients with in OT!
Track your symptoms. Keeping a detailed record of your symptoms, their severity, and their impact on your daily life can be a valuable tool when discussing your concerns with healthcare providers.
Seek support within your chronic illness community. Joining support groups or seeking guidance from others who share your diagnosis can provide emotional support and valuable insights for navigating the healthcare system. If you have POTS or a form of dysautonomia, Dysautonomia International has resources and local support groups you can contact.
Medical gaslighting is a serious issue that can exacerbate the already challenging journey of living with a chronic health condition. By raising awareness about this problem, we can all work together to create a more supportive and empathetic healthcare environment and society. If you have suffered from medical gaslighting or invalidation within the healthcare system, please know that you did not deserve that and you do deserve to be heard, seen, and respected in your care.
My practice specializes in supporting people with POTS and other invisible chronic conditions in navigating the complexity of their illness experience to improve health and quality of life. Schedule a free consultation call to figure out how our work together can empower you on your health journey.