The Challenging Path to Diagnosis

This essay delineates the author's harrowing experiences with endometriosis and the struggles she faced when she tried to garner support for her disease from her loved ones and doctors.

Key Points

Highlights:

• This narrative highlights the difficulties one with endometriosis faces when trying to seek support and acknowledgment of her condition from loved ones and health care providers.
• The author states that the status quo will only change with patient self-advocacy and knowledge.

Importance:

• Endometriosis is a painful disease physically and mentally. Women suffering from endometriosis ought to have proper support systems. If their loved ones and health care providers refuse to acknowledge their condition, these women lose their support system, and their journey becomes much more difficult.

What’s done here?

• The author delineates her struggles with legitimizing her endometriosis in the eyes of her loved ones and health care providers.
• The author does cite other publications within her narrative to better support her overall message.

Key points:

• Since puberty, the author has struggled with menstruation. It was a difficult period that was not only embarrassing but all-consuming.
• A pharmacist and various loved ones told the author that she could avoid such pain by fulfilling her traditional role. In other words, if she had a baby, all this pain would go away.
• She has faced experiences where she has been called weak and a baby for reacting to the pain she felt.
• The author herself, when getting older and the disease more severe, she found herself missing various engagements because of the condition.
• The author would not be able to advocate for herself in front of her health care providers. These health care providers would not believe her symptomology.
• Medicine was unable to discern anything out of the ordinary. Doctors would give treatments, like narcotics, that would not address the pain.
• The author heard the term endometriosis in passing and researched it in great depth. Finally, she brought it up with her health care provider. She demanded exploratory surgery, which was fruitful as it confirmed her initial diagnosis.
• Before the surgery, the author had bought into the belief that women can endure pain better than men and that it was taboo for a woman to talk about the pain she experiences.
• Endometriosis is a cyclical disease that does not present with disease-like symptoms.
• Most women who suffer from endometriosis do not critique the system. The author says that this is because women with endometriosis want their pain sanctioned and will do anything to be healed.
• The dominant biomedical model is tremendously unfair to the women who suffer from endometriosis.
• The author calls for a more visible moral imperative with regards to medical and social narratives about endometriosis.
• There has been more celebrity support for the disease.

Lay Summary

Kallia O. Wright, a professor at Illinois College, recently published her essay titled “You have Endometriosis”: Making Menstruation Related Pain Legitimate in a Biomedical World” in Health Communication. This essay delineates the author’s experience with endometriosis.

The author started experiencing pain during mensuration after puberty. Her pain was often ignored or made fun of. Additionally, many people, loved ones included, would say that the pain would go away if she just embraced traditional gender roles and started a family. This lack of support from loved ones made the authors journey much more difficult. The disease also became more severe as time progressed. The author was forced to miss various engagements for the sake of her unacknowledged disease.

The medical field was also unsupportive of her condition. Doctors did not believe her symptoms, and they were unable to discern anything out of the ordinary on traditional diagnostic tests. Health care providers gave her medications that did not address the issue at hand. When she came back complaining about the pain, they would immediately conclude that she was not taking the medication properly. The author finally heard the word endometriosis in passing and proceeded to do some research on the condition. She went back to the doctor’s office and asked for diagnostic surgery. The doctor was not apprehensive, but Ms. Wright was unrelenting. The surgery revealed that Ms. Wright did, in fact, have endometriosis. 

The author is slowly recovering from her illness, but she acknowledges that there are other women out there who have endometriosis and are going through a similar harrowing experience. The author lists some common perception that are hurting women with endometriosis. These perceptions include the idea that women can endure more pain than men and that women should not talk about their pain. Additionally, the current dominant biomedical model is not favorable to those suffering from endometriosis as the disease is cyclical and does not present with disease-like symptomology. The author calls for more clear moral imperative when it comes to medical and social narratives about endometriosis. She states that women with endometriosis should engage with the disease and actively negotiate with health care providers about potential courses of action. Additionally, she points out the increase in celebrity advocacy for this disease.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/29465255