Finding Empowerment in the Medical System
Posted on 4.12.2012 by Kelly
“So, why are you here today, your foot?” asked the nurse, noting my cast from a recent injury. “No, I am here for a pap smear,” I replied. “Oh,” she frowned. “I wasn't aware of that. Let me go check to see if the doctor has time for a pap smear. You need to inform us in advance if that is the reason for your visit.” I had taken time out of work to be at this appointment, which I had made three months previously. Due to the doctor's busy schedule I was already months late for the test, the last in a series of follow ups after treatment for cervical dysplasia, a precursor to cervical cancer. When the nurse returned to inform me that I had to reschedule the appointment and the earliest available time was in another two months, tears of frustration came to my eyes. Never was I asked whether I was feeling anxiety over the exam or whether it would be a financial difficulty to take more time out of work. Nor did anyone reassure me that I would not jeopardize my health by waiting another two months. Although I was able to schedule a much earlier appointment with another member of the practice, I left the doctor's office discouraged at what was the latest in a series of negative experiences relating to my reproductive health.
Throughout my year-long experience of being diagnosed with and treated for cervical dysplasia, my interactions with medical providers left me with feelings of anxiety, guilt, confusion, and disempowerment. When my doctor first informed me that my routine pap test had revealed abnormal cell changes, she also told me I had tested positive for, “the virus that can cause cancer,” rather than calling it by its name, HPV. By avoiding official terminology she seemed to be trying to soften the news, but instead added a feeling of stigma to the diagnosis. Although she reassured me that these sorts of results are common, I felt ashamed. As someone who feels well-educated and careful about my sexual health, I was devastated by the idea that somehow I had acted irresponsibly or “slutty.” After more testing I was informed that I had moderate to severe cervical dysplasia. The doctor recommended that I have a procedure called cryosurgery, which would freeze off abnormal cells. In a previous visit the doctor had told me that severe cervical dysplasia was one step before cancer, and I was terrified. No other treatment options were discussed so I consented to the procedure. Convinced that my cells were mutating into cancer, I spent the weeks before my treatment fearing that I was going to die. Adding to my anxiety, my insurance company denied coverage of the procedure and I was required to pay several hundred dollars out of pocket. Because I was temporarily living across the country from my primary care provider, I found a local doctor who accepted my insurance. However, because I had not gotten a referral, the insurance company decided that testing and treatment in my new state had been unnecessary and refused to pay. They argued that I should have flown back to see my regular physician, an ordeal which would have cost as much if not more in airfare and lost employment.
The procedure itself went smoothly and subsequent testing has revealed no recurrence of abnormalities. However, throughout the ordeal I felt that the emotional, social, and economic effects of the disease were ignored in favor of only the more mechanical workings of my body. Indeed, my body was not regarded as a dynamic system over which I had any control and I was told to turn it over to others with more knowledge of how to “cure” my problem. Lacking support from my health provider, I found solace from friends and a zine about HPV written by the Down There Health Collective. From this zine I learned that the lifetime risk of a sexually active person contracting HPV is over fifty percent, and that on average the infection is gone within eight to twelve months. I also began an effort to combat the virus in a more holistic way through nutritional changes, vitamins, and herbal supplements. My increased knowledge and self-care lessened my shame and enabled me to take back control of my body and come to terms with my experience of cervical dysplasia.
As someone who is white, cisgender, heterosexual, and English-speaking I have a lot of privilege in accessing care that is affordable, understandable, safe, and sensitive. While currently insured, I spent over a year without insurance and was made to feel that I did not have a right to assert myself when receiving care at free and sliding-scale clinics. I am disgusted by a system that makes people feel that they do not have a right to the care they deserve. Accessible health care is not a privilege; it is a right. Similarly, I am disgusted by the current attacks on access to hormonal contraceptives and abortion services, attacks which hurt everyone, but especially those who are most oppressed by our hierarchical systems of power. These are vital medical options that everyone should be able to afford and to feel safe, informed, and supported in choosing. Indeed, they are one part of a spectrum of reproductive choices which should include not only more conventional options but also comprehensive information about fertility awareness and other non-hormonal birth control options, midwifery care, and alternative methods for treatment, such as acupuncture for menstrual problems. In this blog I plan to delve deeper into the relationships between privilege, control, and reproductive health, as well as examine ways we can regain control through resistance, self-care, sharing of knowledge, and the creation of new systems.
For more information about HPV check out the HPV zine written by the Down There Health Collective. I also recently found a great post by Lola McClure, a rad nurse who wrote “A Scenic Guide to Your Abnormal Pap Smear.”