Recommended Book Illana Jacqueline unveils Medical Gaslighting
Congratulations on the publication of your latest book , Medical Gaslighting . What inspired you to write it ?
Thank you so much ! This book was inspired not just by my own experiences of being undiagnosed and gaslit for 19 years before my rare disease diagnosis , but also by the stories of other patients I ’ ve worked with throughout my career in advocacy . I saw a lot of patterns in how patients with complex or unusual diagnoses were often dismissed or shamed by their providers . Originally , I really thought it was exclusive to rare disease . But once I moved my advocacy efforts more towards the focus of women ’ s health — I realized , wow , this isn ’ t just happening to rare disease patients , it ’ s happening to patients with even the most common medical issues . Particularly , it was happening to women .
What is your definition of medical gaslighting and how widespread do you believe this problem is in the healthcare system today ?
I define Medical Gaslighting as the act of a healthcare provider dismissing or ignoring a patient ’ s concerns or complaints and leaving them without a clear treatment plan or diagnosis , often stating that the patient has an unspecified mental illness or is exhibiting an unnecessary amount of caution . My book goes through the multiple ways medical gaslighting can present . There is a general misunderstanding around tone . It ’ s not always doctors who yell at you or berate you , or even say any of the familiar catchphrases of gaslighting like ,” I think this is all in your head ” – sometimes the tone is very calm , caring and supportive . But in the end , it still robs you of what you ’ re looking for : a diagnosis , a treatment and a care plan that is well-thought out and investigated . I think the key to being your own best advocate is to participate and collaborate . Go to each appointment prepared with what you want to get out of it , come with evidence of your issue , and ask questions until you fully understand what the plan will be for you .
Your work as a patient advocate is inspiring . What advice do you have for others thinking of becoming more vocal in their support of people with disabilities ?
Advocates can have so many different jobs and skills . I think you first have to figure out what can you bring to the table to help your community . For me , I was focused on public relations , writing and social media . I was able to take those skills into a job as Managing Editor with a rare disease nonprofit called Global Genes at the
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