Medical Gaslighting: How to Get the Care You Deserve in a System that Makes You Fight for Your Life

“Whatever you take away from this book, I hope the woman you walk alone with is one you can trust even more now. I hope she is someone who will speak for you when things from your past try to pull you into silence. I hope she will mourn in your stoicism, make space for your grief, and demand to your words.”

Ilana Jacqueline has many aha! moments in her treatise, Medical Gaslighting, from her detailed explanations of treatment for chronic pain, including Somatic Experiencing and Eye Movement Desensitization and Reprocessing. Both are methods to reprogram the brain after a traumatic event. As a lifelong sufferer of chronic pain from a rare disease that afflicted the women in her family, she speaks of traumatic health care experiences in the United States. She identifies medical gaslighting for those whom are novices to the experience and informs the reader on how to ask for and get the care you need without pissing off the medical establishment. The latter is extremely important, because it could cause care interruptions, clinician refusal to accept you as a patient, and potential reimbursement issues.

“Is it gaslighting a medical necessity or just shitty American healthcare?”

The table explaining gaslighting is a superb summary of the criteria to gauge the phenomenon. She coaches the reader through finding the care you need, getting the clinician engaged in being your care advocate, and working the enormously complex United States healthcare system. In American health care, clinicians are afforded little time with individual patients, because so much of it is spent in bureaucratic paperwork, consequently the well-prepared patient has a better chance of optimizing her care.

No book on health care for women is replete without a clinical sexual assault story, which unfortunately, many have experienced. Jacqueline guides the reader through scenario(s): how to address the clinician who always wants to give you a pelvic exam when you have a completely unrelated concern, the one who lingers with his finger(s) just a bit too long in your vagina and who wants to do the pelvic exam without a medical assistant in the room. The author provides practical tips on how to address the social emotional issue and speak up for yourself and others.

One of Jacqueline’s most endearing moments is when she talks about her scars from her many surgeries, “they’re puckered, circular, a whole Jackson Pollock thing happening.” Maintaining gallows humor is sometimes the only thing that works in the face of lifelong medical problems. Clarissa Pinkola Estes would make her a member of the honorable scar clan.

Medical Gaslighting is not for the squeamish as the author includes passages about surgeries done without adequate anesthesia, amputations of fingers because clinicians would not listen to a patient, and other horrors of the healthcare system. As Jacqueline opines on the safety of U.S. health care, “We are not as safe as we think we are.”

This book is chock full of practical tips on accessing useful information on disease specific care or the performance of clinicians through Facebook (Meta) and online reviews, such as Google. It must be stressful for clinicians because they are constantly being evaluated. Every time we go to the doctor or even pick up a prescription, we are prompted to complete a survey. Is this necessary?

Also, those things are irritating because they are designed to stop if you choose not to answer some of the questions. Her chapter about understanding clinical notes in your medical record is superb. Of course, if there are errors in your medical record it will not be easy to have them changed. Finally, Jacqueline coaches the reader on how to speak to a healthcare provider, especially about pain, a symptom with a lot of cultural bias, especially for women.

As a checklist fan, her “Ten Affirmations for Your Next Appointment” are a balm for the soul. These are crib notes to prep for your next big meeting with the healthcare continuum. Item number eight is a favorite, “Courage is seeking help, especially knowing it may not be given.”  

Medical Gaslighting is a practical, easy-to-read guide for getting the health care you deserve. Recommended reading.