The CATS Project team has published their first article based off of the online survey conducted in Fall 2021. The article is titled: “Long Covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment”, and can be found at SSM – Qualitative Research in Health. The paper is open access, which means it is freely available to all.
Here is the abstract of the paper:
While we know a lot more about Long Covid today, patients who were infected with Covid-19 early on in the pandemic and developed Long Covid had to contend with medical professionals who lacked awareness of the potential for extended complications from Covid-19. Long Covid patients have responded by labeling their contentious interactions with medical professionals, organizations, and the broader medical system as “gaslighting.” We argue that the charge of medical gaslighting can be understood as a form of ontological politics. Not only do patients demand that their version of reality be recognized, but they also blame the experts who hold gatekeeping power over their medical care for producing a distorted version of said reality. By analyzing results from an online survey of Long Covid patients active on social media in the United States (n = 334), we find that experiences of contention and their reframing as “gaslighting” were common amongst our respondents. In short answer responses about their experience obtaining medical care for Long Covid, our respondents described encountering medical professionals who dismissed their experience, leading to lengthy diagnostic odysseys and lack of treatment options for Long Covid. Even though we are limited by characteristics of our sample, there is good reason to believe that these experiences and their contentious reframing as medical gaslighting are exacerbated by gender, class, and racial inequalities.
We would like to thank all the Long Covid patients who took the time to share their experiences with us.
This is the first in a series of papers from the CATS team. We will post updates here as we continue to publish our findings.
Thank you very much for sharing/publishing this research. “Nice” (probably not the right word) to know that there are others experiencing the same sort of issues I am with the medical system. My experience with long covid has completely undermined my faith in the way the medical profession is practiced in the western world. You haven’t posted anything in nine months on the blog – I hope the work is continuing. Look forward to seeing more work you do and happy to give further thoughts/experiences if so desired.