Guest blog written by Dr. Kendall Soucie from The H.E.A.L Lab
In the Health Experiences and Longevity Lab (H.E.A.L) in the Psychology Department at the University of Windsor, we study women’s health and wellness. While we study chronic health conditions broadly, our research captures the lived experiences, diagnoses (and misdiagnoses) trajectories, health management, and disclosure of one of the most common yet misdiagnosed conditions: Polycystic Ovary Syndrome (PCOS). PCOS affects 1 in 10 women worldwide and brings with it a host of symptoms that are all encompassing/pervasive (i.e., they affect every aspect of a woman’s life), and may include ovarian cysts, menstrual abnormalities, fertility concerns, insulin-resistance, obesity, diabetes, high blood pressure, abnormal cholesterol levels, alopecia, acne, and mental health complications (e.g., anxiety, depression, and body image disturbances). These physical and psychological health complications are clearly progressive, which means that early intervention is CRUCIAL.
BUT…here’s the thing. A swift and timely diagnosis rarely happens. In Canada, it takes nearly five years AND consultations with numerous health care providers for a conclusive diagnosis to be made. These delayed diagnosis timelines in Canada parallel those in other countries (e.g., USA, Iran, UK, Australia), despite that these countries differ in levels of universal health care. This suggests that the delays in diagnosis are not due to health policies or access to care. Our lab delved deeper into why these diagnosis lags happen, and the breakdown seems to originate during the very first encounter with a medical professional in adolescence. Imagine you go to the doctor because you’re concerned about your health, and this sequential pattern happens…. your symptoms are dismissed, and/or you’re told you’ll “grow out of it” or “come back when you want to have kids”. Then you learn to doubt yourself, and you tell yourself, maybe you were mistaken or wrong, and that nothing’s actually wrong, only to notice that you feel worse, and so you go back to the doctor. You continue to again be dismissed, to be blamed for your symptoms, and are told “it’s all in your head” and you leave defeated, again. Then, finally, after years of this back-and-forth cycle, you finally get a diagnosis and are relieved! You knew you were right and are angry that you doubted yourself. Even once you get a diagnosis your health is still not treated as a priority. Instead of information or resources about PCOS from your provider, you leave the office with a prescription for birth control or metformin and told nothing about contraindications, comorbidities, or what to do next. You worry about the future, about your health, your ability to have children if you want them, and so you turn to the internet for information and support. This trajectory is the most common diagnosis narrative that we see in our research. It is oppressive, it is sexist, it is exacerbated by the intersectional marginalization of BIPOC women, and it is medical gaslighting at its finest.
But do not despair, this is not how your story has to end. . It does not have to be the fate of OUR stories; to accept this subordination and to never be seen or heard from again. It’s important that we bring these stories to the surface, share them with others, empower each other, and unite. Together, we can challenge the status quo, and fight back. Social media is powerful, and women around the world have been sharing their experiences of #medicalgaslighting and illuminating the ubiquity of these experiences. For some examples, click here, and here, and here, oh, and here too (you get my point). It has been remarkable. As one article states, “we know our bodies, it’s time doctor’s start listening.”
So, where do we go from here? Armed with this information, we have several projects on the go. We are diving deeper into medical gaslighting, and plan to launch a research project to empirically investigate what it is, what it does, why it happens, and practical/tangible strategies for how to fight back against it). We are also exploring links between women’s health, and intimate partner violence (IPV), and the potential link between PCOS and IPV. We are also tackling disclosure of PCOS to others, and how PCOS impacts specific domains of one’s life story. We are also focusing on intersectionality and PCOS diagnosis experiences, and the role of obesity stigma in length-of-time to diagnosis, and quality of life. Our ultimate goal is to improve health care equality through the inclusion of feminist approaches to health care, cultural humility in health care practice, and advocacy. We are in the process of compiling resources, education, information, and advocacy on our H.E.A.L website that we hope will help you in all domains of your life.
For more information about us, what we do, and our fantastic student researchers, and what they are up to, please see:
Our website, https://www.healuwindsor.com/, or
Check out our Facebook Live events, too!
We have one coming up on April 29th, where H.E.A.L’s own Jasmine Kobrosli will talk about Consent with Anne Rudzinski, Sexual Wellness and Consent Coordinator at University of Windsor.