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Summary of Transcript:
The speaker discusses endometriosis, a common but poorly understood condition that affects one in ten women. It causes extreme pain, is a leading cause of infertility, and has been known for thousands of years, yet there is still no cure. The speaker describes her own experience of experiencing excruciating pain and bleeding heavily due to misplaced tissue that looks and behaves like the endometrium throughout her body. The speaker argues that the reason we know so little about endometriosis is that society is silent about menstruation, which is still taboo and shrouded in shame. This silence contributes to a lack of awareness and understanding of endometriosis and prevents people from seeking treatment.
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Summary of Description:
Alekszandra Rokvity is a Serbian writer and endometriosis activist who is also a sufferer of the disease. It is estimated that one in ten women suffer from endometriosis, and it takes about eight years for an endometriosis patient to receive an accurate diagnosis. Alekszandra committed herself to raising awareness about endometriosis through activism, NGO work, and academic research after receiving a diagnosis of endometriosis after 15 years of medical gaslighting. She is currently pursuing a Ph.D. at the Karl Franzens University of Graz where her doctoral dissertation is exploring the experiences of people with endometriosis within the healthcare system. Her work focuses on the connections between gender, age, the stigmatization of menstruation, and how this results in discrimination within the healthcare system.
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Endometriosis: An Invisible Disease with Alekszandra Rokvity
Introduction:
When we get ill, we visit our doctors and hope that they will diagnose us quickly and effectively. But did you know that it takes about eight years for a patient with endometriosis to receive a proper diagnosis? Endometriosis is a painful disease affecting approximately one in ten women. Despite this, it remains one of the most misunderstood medical conditions.
Meet Alekszandra Rokvity:
Alekszandra Rokvity, a Serbian-born writer and endometriosis activist, has dedicated herself to raising awareness about endometriosis. Her mission is to turn her pain into passion, and she has achieved this by becoming an advocate, writer, and academic researcher. She not only studies endometriosis but also suffers from it, which makes her story even more impactful.
15 years of Medical Gaslighting:
Alekszandra’s diagnosis came after 15 years of medical gaslighting. Gaslighting is when a person is made to feel they are overreacting to symptoms or having psychological issues, leading them to question their own judgment and causing them to endure more suffering than necessary. This apparent lack of knowledge among medical professionals is one of the reasons it takes so long to diagnose endometriosis.
Awareness & Activism:
Alekszandra decided to take her advocacy work to the next level and became a productive activist. She committed herself to raising awareness about the disease through her NGO work, as well as her academic writing and research. She is currently pursuing a Ph.D. at the Karl Franzens University of Graz, where her focus is on cultural studies and health humanities.
Experiences of Endometriosis Patients within Healthcare System:
Alekszandra’s doctoral dissertation is an interdisciplinary project focusing on the experiences of people with endometriosis within the healthcare system. Her work emphasizes the connections between gender, age, the stigmatization of menstruation, and how these factors lead to discrimination within the healthcare system.
Gender Discrimination:
Endometriosis disproportionately affects women, and it’s thought to be linked to estrogen. Alekszandra contends that the lack of awareness about endometriosis and the numerous misdiagnoses that occur stem, in part, from the fact that it is viewed as a women’s issue by the medical community. This often leads to male physicians treating the condition as “normal” and not taking the pain and discomfort seriously.
Conclusion:
Endometriosis is a debilitating condition that can impact a person’s daily life in many ways. It’s a disease that affects women from all walks of life and often goes undiagnosed or misdiagnosed. Alekszandra Rokvity’s activism and academic work has shed light on an issue that affects millions of women worldwide. By sharing her own experiences, Alekszandra is turning her pain into passion, advocating for people with endometriosis, and working to create a better healthcare system for all.
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See Original Source
Source Description
Did you know that it is estimated that one in ten women suffer from endometriosis? That it takes about eight years for an endometriosis patient to receive a proper diagnosis? That it is one of the 20 most painful diseases in the world? No?
Then you should listen carefully to what Alekszandra Rokvity has to say, who suffers from the disease herself. Also, she studies endometriosis and is a productive activist.
Alekszandra is a Serbian-born writer and endometriosis activist, who decided to turn her pain into passion! Upon her endometriosis diagnosis, which he received after 15 years of medical gaslighting, Alekszandra committed herself to raising awareness about endometriosis: through activism and NGO work, as well as through academic work. She is currently pursuing a Ph.D. at the Karl Franzens University of Graz. Her doctoral dissertation is an interdisciplinary project focusing on the experiences of people with endometriosis within the healthcare system. She specializes in cultural studies and health humanities. Her work explores the connections between gender, age, the stigmatization of menstruation, and how this results in discrimination within the healthcare system. She has previously studied and taught in Serbia, Canada and Vietnam. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
