Endometriosis is an inflammatory condition where tissue similar to the lining of the uterus grows outside the uterus. It affects one in 10 women and undetermined numbers of transgender and non-binary people.
Even today, endometriosis commonly gets misrepresented and inaccurately defined, sometimes even within medical literature. It is also widely treated as a reproductive disease, despite often affecting other organs and systems of the body.
In 2018, “What is endometriosis?” was the third highest trending health-related question on Google. In the United States alone, there are more than 400,000 monthly Google searches of endometriosis.
Endometriosis awareness has skyrocketed over the last decade thanks to social media use, bringing with it both new resources and new challenges for those living with the disease.
The amount of knowledge, representation and support that people living with endometriosis produce on social media is astronomical. Although it is important to remain wary of misinformation, it is also necessary to listen to what these patients are saying and not dismiss their social media use.
Histories of mistreatment
Patient-blaming in endometriosis can be traced as far back as 400 BCE, when women were often held responsible for their symptoms for dubious reasons such as “poor morals” or too much sexual intercourse.
People living with the disease face a worldwide average delay of 7.5 years between onset of symptoms to diagnosis.
In the face of this mistreatment, many turn to social media for answers.
Turning to social media
In my survey of 287 people living with endometriosis, 61.6 per cent of said they did not learn about the disease from a health-care practitioner, and 11.5 per cent of those who did still experienced dismissal, delays or misinformation from those practitioners.
Although only 23.6 per cent first learned about endometriosis online, 81.6 per cent said that social media played a role in their process of seeking a diagnosis or learning about endometriosis. Similarly, 92 per cent said they learned something new about endometriosis from social media that they did not hear about elsewhere.
It is clear that social media has played an important role in making information about endometriosis more accessible. Advocate-run Facebook groups and Instagram pages mean that people can type their symptoms into Google. Although misinformation also propagates online, endometriosis advocates have worked hard to try and make accurate information rise to the top.
The Facebook group “Nancy’s Nook Endometriosis Education,” for example, provides an enormous archive of files with information and research on endometriosis, including how to find specialized doctors. In the last year, Nancy’s Nook has grown to well over 100,000 members, including patients, doctors and caregivers. Nancy’s Nook focuses primarily on education, but other groups such as “Endo Knows No Gend-o” and “EndoMetropolis” provide emotional support.
Instagram pages such as @EndometriosisSummit and @theendo.co use popular trends like selfie challenges to promote accurate information. However, their content must also compete with businesses who use the hashtag #endometriosis to sell their products and celebrities or influencers who may share misinformation.
While the endometriosis social media landscape is fraught, it is also growing at a rapid pace. As my survey shows, social media often provides important resources and support to many of those living with the disease. Despite this, research suggests that there is commonly a trust gap between doctors and patients when discussing information found online.
Patient-blaming in the 21st century
The history of patient-blaming haunts contemporary conversations around social media use. Patients turn to social media in the face of discrimination and mistreatment, but are further dismissed if they bring up that social media use in the doctor’s office.
Although consulting health information often makes patients feel more knowledgeable, empowered and prepared, bringing it up during appointments can lead to conflicts and distrust between the patient and doctor. However, when both parties discuss online health information openly, it can actually improve the patient-practitioner relationship.
Opening up to patient-produced knowledge and representations can help expose the gaps that exist in endometriosis care. As my research shows, people with endometriosis are hungry for information and proper treatments.
Advocacy around the disease has never before been so widespread and accessible. Including the data produced on social media in our endometriosis literature may help us create better futures for both patients and providers.
Eileen Mary Holowka receives funding from the Social Sciences and Humanities Research Council (SSHRC).