A Global Genes Quick Guide is a resource for advocates focused on pressing topics causing challenges in their lives and communities.
Medical Gaslighting: The Issue
Medical gaslighting occurs when a patient’s genuine concerns for their medical care are dismissed without proper examination and evaluation due to a healthcare provider’s ignorance or implicit bias. It’s no surprise that people with rare diseases experience medical gaslighting far too often. Unlike other forms of gaslighting, healthcare providers may not be purposefully manipulating patients – the issues often arise due to lack of awareness or understanding of diseases, poor communication skills, unconscious bias, misunderstanding of clinical presentation, lack of time with patients, or arrogance. Purposeful or not, the frequency of which the rare community experiences medical gaslighting – healthcare professionals who dismiss needs, attribute symptoms to psychological causes, or undermine the person’s experience and concerns drives compounds the already difficult journey toward proper case and diagnosis. The impact is profound, and can lead to prolonged suffering, PTSD, mistrust in healthcare providers, delayed or inadequate diagnosis or treatment, emotional distress, and a patient population discouraged from seeking future care or advocating for themselves in medical settings. Stories of medical gaslighting where patients’ concerns are minimized or outright ignored highlight the emotional and systemic barriers to healthcare. The following perspectives and experiences offer a window into the real consequences of this troubling dynamic. By sharing these narratives of the impacts and resources to address medical gaslighting, we can help foster better understanding, and empower patients and caregivers to advocate more effectively for their needs.Medical Gaslighting: The Lived Experience
Emma Nadler, is a rare mom, a psychotherapist and author, and even she was late to realize medical gaslighting could be a factor in advocating for her daughter with a rare genetic deletion. Having experienced it she now sheds light on the critical importance of recognizing and addressing medical gaslighting, as it affects both patients and their families. Astoundingly, as the caregiver and mom of a child with an extremely rare genetic deletion, I only very recently learned of the term medical gaslighting, which is dismissal, invalidation and inadequate care in a medical setting. From my work as a psychotherapist, I’m well acquainted with the general term gaslighting, a form of manipulation that causes a person to question their own feelings, experience, and sometimes, sanity. But I know many others could benefit from learning about medical gaslighting too, since the label is inherently validating.
Don’t get me wrong, I’ve experienced it plenty. I spent the first several years of my daughter’s life advocating for the treatment of her severe feeding issues. I was told by medical professionals that it was likely my anxiety about her eating that constituted the problem; this judgement endured until she was finally diagnosed with a rare, significant genetic deletion. Shortly after her diagnosis, we learned that her intestines were nearly tied in a knot and required corrective surgery.
Better understanding this insidious issue will help patients and family members advocate for medical dignity. And, hopefully, to feel less alone if and when medical gaslighting happens to them.
Emma Nadler is a Twin Cities-area psychotherapist, speaker, and the author of The Unlikely Village of Eden: A Memoir.
Ilana Jacqueline has learned how commonplace medical gaslighting can be from both her own experience living with a rare disease and from the dozens of other patients she has connected with in her professional roles in patient advocacy. Too often when a doctor has not previously seen a particular rare disease in their practice, they’re likely to fight that diagnosis and try to make the symptoms conform to a more common diagnosis. But this can amount to ignoring the symptoms and the insights of the patient.
“During my time working as Managing Editor at Global Genes I helped with the intake of years worth of patient stories. I can’t recall a single one where a patient or their caregiver didn’t experience, at some point in their journey, some sort of dismissiveness or scrutiny from the diagnosing or treating physicians when they encountered a rare diagnosis.
Rare patients and their caregivers have to advocate more intensely than those with more widely known conditions against the dangers of medical gaslighting which can include a delay in diagnosis, care and treatment, the spread of disease or infection, and the potential that patients will stop seeking care despite life-limiting or life-threatening symptoms.”
Ilana Jacqueline, author of Medical Gaslighting: Getting the Care You Deserve in a System that Makes You Fight For Your Life.
Learn how Ilana inspired the TV series Behind The Mystery here. And read this piece Ilana wrote while working for Global Genes 12 years ago. Teaching a Child with Rare Disease to Cope: Tips for Parents from a Rare-Kid-Turned-Adult
They said everything was in my head. So they sent me to a psychologist instead of doing more tests. I was getting depression medication and anxiety medication when I didn’t need it. Because they didn’t believe me.
Luisa Leal, Founder & CEO at The Akari Foundation
Lakeia Nard highlights the emotional and psychological toll of medical gaslighting, particularly for marginalized communities, and emphasizes the need for greater recognition of systemic racism within healthcare. For real progress to be made, there must be a shift in the medical community to listen to patients’ lived experiences, empowering them to advocate for their own care and restoring trust in the healthcare system.
“Medical gaslighting often feels like you’re screaming into a void, trying to convince people your lived experience matters. I wish I had known earlier that medical gaslighting is real and often rooted in systemic racism, which perpetuates the dismissal of concerns from marginalized communities. I would have advocated sooner and pushed harder rather than assuming I was wrong simply because medical professionals seemed to know more. What I want others to understand is that medical gaslighting doesn’t just delay diagnoses—it erodes trust and harms mental health. The medical community needs to recognize that their teachings are rooted in systemic barriers and biases, and it’s critical they listen to their patients, who are the ones with lived experiences. Patients and families are experts in their own stories, and their voices should be at the center of care.”
Lakeia Nard, Founder Melanin Children Matter Inc.
Being ignored by healthcare professionals is emotionally exhausting and isolating for parents. Michelle Fruhschien shares how while advocating for a child’s health, urging parents to trust their instincts and push for the care their children need, despite feeling isolated or invalidated.
“I knew my daughter’s development was different, but doctors dismissed my concerns, insisting she’d “catch up.” When she was misdiagnosed, I spoke up, but my doubts were ignored. It was isolating and exhausting to fight to be heard. Only when we got the right diagnosis did I feel validated, but the damage of being dismissed still feels present. Parents know their children best. If your gut tells you to push, push harder than you think you could. We shouldn’t have to feel like we need to constantly prove ourselves.”
Michelle Fruhschien, Rare Disease Advocate
Medical Gaslighting: The Resources
Videos
- Medical Gaslighting and PTSD panel discussion at 2024 Week in RARE. The panel explains what medical gaslighting is, what to do about it, and the impacts of PTSD.
- Medical Gaslighting, What it Is and How to Address It from the Global Genes 2022 RARE Health Equity Summit The panel discusses the barriers that rare disease patients face when speaking to healthcare providers, and the challenges underserved populations in particular may encounter.
- Medical Gaslighting in the Chronic Illness Community with Melissa Geraghty, Psy.D. Details common signs of medical gaslighting to watch out for and practical tips on what to do if you have experienced medical gaslighting
Blogs
- Practical tips to Effectively Communicate Your Rare Disease Journey to Healthcare Providers
- When We Medically Gaslight Ourselves (and the importance of stopping), by Jenny Jones
- Navigating the ER as a Rare Disease Warrior (a calm approach to avoid gaslighting, armed with medical history)
Articles
- How to Avoid Gaslighting a Patient (best practices for doctors), by Evelyn Nicole Mitchell, MD
- Medical Gaslighting: Definition, Examples, & How to Handle It, by Maggie Holland, MA, MHP, LMHC
- How I Got My Doctor to Hear Me, by Melissa Erickson How people who were medically gaslit got on the same page as their provider.
Podcasts
- Medical Gaslighting and the Power of Self-Advocacy -and bringing better awareness to healthcare providers with Ilana Jacqueline. from the CareTalk podcast
- The Power of Being Heard, from the Stronger Every Day podcast. Strategies to manage the emotional toll of feeling dismissed or gaslit as a rare disease parent.
- Understanding Medical Trauma & Gaslighting – Are doctors biases toward the common causing them to dismiss the rare? – with Christy Reichart LICSW, from The Chronic Illness Therapist podcast
- Chronic Illness, Healthcare Biases, and Medical Gaslighting – When you’re told it’s not real, playing a character to get heard – with Shyla Hernandez, from The Sick Gaze podcast
Medical Gaslighting: Moving Forward
Navigating the complexities of rare diseases and chronic conditions is difficult enough when there is honest open communication. Empowering individuals to trust their instincts and advocate for the best care possible, while holding the medical community accountable, is a crucial skill for navigating the healthcare system. Together, we can work toward a better future where every patient feels seen, heard, and valued. If you have specific questions or need additional support you can contact our RARE Concierge patient service guides. Do you have a story of experiencing medical gaslighting as a person living with a rare disease or a caregiver? Submit your story for us to consider publishing it here.
Global Genes 2025 Quick Guide Series is our way to respond to a common need we have heard for more information in the rare community. Think of them as the answer to one frequently asked question or pain point we have heard from our Rare Concierge, our online and in person communities and our Global Advocacy Alliance. Each one is complete with links to additional related resources across various media types, both those that are authored by Global Genes and from outside sources as well.
This series is supported in part by: Amgen, Amicus, Alexion, Beam Therapeutics, Biocryst, BridgeBio, Chiesi, Illumina, Mallinckrodt Pharmaceuticals, Merck, and Parexel
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