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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 non-profit called Global Genes at the start of my career. There are so many great free resources that patients can utilize without having to go to school or pay for a degree. The Social Health Network offers a Patient Leader Certification course that I helped to design. It’s 100% free and offers patients, caregivers, and allies an opportunity to explore how their skillsets can fit into the world of advocacy.
How does Medical Gaslighting build on your first book, Surviving and Thriving with an Invisible Chronic Illness?
My first book was really meant for young adults and adults who were recently diagnosed. I like to think of it as the beginner’s guide to independence with a chronic illness or disability. Medical Gaslighting is really going deep into the subject of women’s health and helping patients to gain awareness of how we’re being treated in the exam room. It is also stuffed with examples, scenarios and advice on how to respond to it.
How can society work to erase Medical Gaslighting from the medical world? Do you believe it can ever be removed entirely?
Medical Gaslighting stems from medical bias, which is something that is deeply, deeply ingrained in the medical system. It’s written into textbooks, coded into insurance and enmeshed in research. I think there are a lot of doctors who are firmly set in their way to continue practicing medicine the way it is. Fortunately, I think they will leave medicine one way or another within the next few decades, leaving room for new talent with better education to come through. Erasing medical gaslighting will not happen overnight, which is why I was so determined to create a resource for women to help them survive until that happens.
What do you hope to accomplish with the publication of Medical Gaslighting?
I’d like to keep women alive long enough to see changes in the medical system itself. I think there’s also a lot of longing for understanding and direction when it comes to facing medical gaslighting. We want to be heard and understood, but we also want to know what to do about it. It’s not enough to be aware and vigilant. The tools and strategy are so needed right now. I hope this book gives women methods to try that may actually make a difference in their care.
Medical gaslighting can have severe mental and emotional consequences. What are the psychological effects of this phenomenon, and how can patients heal from the trauma of being dismissed?
Medical Trauma can show up in many ways: depression from the hopelessness of not being believed. Anxiety from having to be in medical settings where they’ve experienced traumatic situations before. Hospitalizations and surgeries may cause recurrent stress from poor past experiences. I spoke with Dr. Michelle Flaum, acclaimed professor and creator of the first medical trauma course for Xavier University. She gave some excellent advice on different somatic therapies that might be more beneficial for patients than traditional cognitive behavioral therapies most patients are referred for. I shared this in my book.
How has your own experience with chronic illness shaped your perspective on the doctor-patient relationship, and what have been some of the most empowering moments in your healthcare journey?
I look at the doctor-patient relationship as a dating pool. You’re going to find some great matches and you’re going to have encounters that will make you want to climb out the bathroom window. As I wrote about in the book, I have had some truly awful, unnerving experiences with providers. But I’ve also had truly beautiful experiences as well. I’ve had physicians who were collaborative, empathetic and genuinely curious and innovative when it came to my treatment. I’ve seen great relationships come out of terrible experiences and I know how powerful it can be when a physician works with you instead of against you.
In your work as an author, patient advocate and influencer, are there any significant moments or achievements that stand out for you?
Writing the books were always a main goal of mine. I didn’t even anticipate taking my advocacy to social media, but that’s been the biggest surprise delight so far—just seeing how receptive the internet has been in general to the kind of advocacy work I do and their interest in learning and applying self-advocacy to their own care through demonstrations of that which I portray in my videos.
What message would you like to share with the world about the importance of advocating for yourself and others’ rights as a patient?
The message is that while it may feel like there are so many gray areas, and there are so many things we ask for in so many different words, all self-advocacy is asking is to stay alive. It may be hard to see the forest through the trees when you’re in the exam room, but it is life or death when it comes to self-advocacy. Your words and actions are the difference between getting a diagnosis and not, between finding appropriate care and settling for inappropriate care. It’s hard work, grueling, but we have to do it.
Are there any new topics you’re passionate about exploring in the future?
I’m really interested in how finance fits into the care and lifestyle of chronic illness. I think that will be my next big focus—how someone with a strong financial privilege copes with disease versus someone with less resources.
Medical Gaslighting can be found on Amazon, local libraries and on her website. An audio version can be found here.
Visit ilanajacqueline.com for more information.