Abstract
This is an autoethnographic account of seeking double mastectomy as a sexual minority due to advanced fibrocystic scarring. Using social construction, feminist, and ambiguous loss theories, themes of the concept of belonging, challenges of health care systems, reconstruction of identity, and responses of others depict the transformative process of gender identity and sense of self. Discussion of the role of resiliency and ambiguity are addressed, as well as ambivalence, and managing external stressors. Recommendations for social work education and practice include advancing sensitivity and competency on gender identity/expression and advocacy role in challenging the gender binary.
This article describes the experience of being a sexual minority needing bilateral mastectomy, and difficulties navigating the social construction of sexuality, gender, and the gender binary. Key themes are identified in seeking the procedure and the recovery process over a 2-year time span. Autoethnographic methods fit well with feminist and phenomenological methods of lived experience (Allen, 2007) and provide an appropriate framework for this article. This narrative is my personal experience. I integrate queer and social constructionist theories, as well as emerging transgender theory. I also draw from AL theory developed by Pauline Boss (1999, 2006), highlighting how resiliency and ambiguity factor into my experiences. Four themes are addressed: Concept of belonging: Gender identity and sexual orientation Challenges in the health care system Reconstructing identity and the self, and Others responses: Ambivalence, respect, and ambiguity
This process is fluid and evolving: What I write today may not hold true to future experiences or understanding sometimes gained by looking back in time. My intent is to add to the discourse on gender identity, gender expression, and the deconstruction of a solely binary perspective of gender.
Theoretical Lenses
Society is constructed around norms of the female/male binary of biological sex/gender, gender identity and expression, and sexual orientation. Transgender theory creates the option of fluid expression of gender and identity (Nagoshi & Brzuzy, 2010). “Gender identity refers to one’s sense of being female, male or otherwise gendered (perhaps transgendered or not gendered at all)” (Burdge, 2007, p. 244). Suggesting that identity be genderless or using new categorizations goes beyond challenging current day biological norms and may be considered quite radical (Gilbert, 2009). Challenging the gender binary may build better understanding, provide better care, and empower people who are oppressed due to nonconforming gender identity or expression (Nagoshi & Brzuzy, 2010). Burdge (2007) describes social constructionism and queer theory to be foundational frameworks supporting gender rights and protections and that “social workers can honor the personal meaning of clients chosen words, even when no ‘official’ definitions exist” (p. 244) to describe who they are.
Applying intersectionality to sex, gender, gender identity, and gender expression results in multiple combinations. We are still forming agreed upon language and understanding of what constitutes gender, gender identity, and gender expression. As Burdge (2007) suggests, social workers can be open to gender diversity and develop intentional interventions to bring about change of the female–male perspective. By moving toward a nongendered perspective, we may ultimately support the breakdown of other isms, such as sexism and heterosexism. Furthermore, Gilbert (2009) addresses nongenderism and states “the assumed naturalness of the gender system means that anyone who violates it is being ‘unnatural’ and so is worthy of censure” (p. 94).
It is essential to understand the potential vulnerability of sexual or gender minority clients who face medical needs or a crisis. Rubin and Tanenbaum’s (2011) study of breast cancer and sexual minority women notes that little feminist research has attempted to understand how heteronormativity influences medical management of breast disease. They identify that body image and identity may be very different for persons whose sexual orientation or gender identity and expression does not fit the dominant female norm. Their participants described “gender policing and medicalization” (p. 406) on decisions about breast reconstruction. Some participants felt pressured by medical providers and supports to do breast reconstruction through both implicit and explicit messages. Some reported feeling pressured into reconstructive surgery, while others felt they had to defend why they didn’t want reconstruction. Rubin and Tanenbaum note various reasons why women may or may not chose reconstruction based on identity or appearance and that “participants were acutely aware of and reflective about …. breast reconstruction in relation to gender identity and feminist body politics” (p. 410).
Pauline Boss’ ambiguous loss (AL) theory (1999, 2006, 2007) identifies losses that are disregarded or discounted as ALs. These losses are often unresolved and ongoing and result in some dysfunction. Individuals may exhibit emotional difficulty and loss of relationships or role confusion, ambivalent feelings, and a sense of a loss of mastery and hope (Boss, 2007). If losses are unrecognized, serious problems in functioning may result due to ongoing stress and lack of support (Boss, 2006). ALs contain boundary ambiguity and ambivalence. Boundary ambiguity is the perceptual response of the system to a loss event (Boss, 2007) and can lead to AL. Ambivalence exists when internal feelings are in conflict. Continued ambivalence and unresolved boundary ambiguity can then result in AL (Boss, 2006).
There are two types of AL: one is due to physical presence, with a psychological absence of the person. One example would be Alzheimer’s disease. A person is still physically present, but psychologically absent or unavailable. The second type is physical absence with psychological presence, such as a kidnapped child, or being shunned by family. ALs are commonly understood as a loss of relationship resulting in some dysfunction. One must learn to live with a “both/and” paradigm (Boss, 2006). The person is here and they are not; I care about them, and I am angry. The stress can become overwhelming and requires adjustment and transition to a changed situation or context (Boss, 2006).
Families may experience strong emotions about a member who is differently gendered in appearance or identity. Likewise, the individual may be ambivalent about their family’s responses. Someone whose gender identity and expression do not conform with other’s expectations may experience AL. Family may interact with them, but demand a person dress in a particular way when they are together. This is physical presence with psychological absence of love/support. Conversely, someone may retain an internal “psychological” presence of family but experience physical absence if shunned by the family. Boss (2006) notes that both types can be present simultaneously.
This theory is compatible with the premise of sexuality, gender, and gender identity as fluid and evolving through expressions of resilience. Resilience is ongoing growth or adaptation despite stressors. Resiliency means being able to adapt to the situation by maintaining overall well-being in the face of ongoing stress over periods of time (Boss, 2006). Despite events, the individual is able to utilize appropriate coping strategies and if these are not present, assess a need for additional supports and/or utilize resources suggested by others.
Diagnosis: Advanced Fibrocystic Scarring With High Risk for Breast Cancer
This endeavor is to record the story from the first-person perspective because it is so rarely documented. A literature search found only two articles specific to this diagnosis and treatment written by medical professionals and published in medical journals in the last 10 years. I lived with this condition for decades and medical records documented prior treatments and family history. The treatment of last resort is bilateral mastectomy, yet it is rarely done. I speculate this is due to barriers within both the medical community and the insurance industry. It was difficult to find a surgeon willing to do the procedure and filing the insurance preauthorization. I also had to appeal an initial insurance denial and provide more documentation. Postsurgery pathology reports revealed both breasts were approaching 45% scar tissue, supporting the diagnosis.
I did not want breast reconstruction and describe the difficulties in being a sexual minority who is not gender conforming seeking appropriate care, and the resulting transformative process. Four prominent factors are identified in this discussion.
Concept of Belonging: Gender Identity and Sexual Orientation
My birth designation is female, but my gender presentation evolved to being predominantly masculine, and it was not unusual for me to be perceived as male due to physique, dress, and mannerisms. I did not identify as male and would correct people most of the time. Sometimes I didn’t, and that is a reflexive observation that, at some level, I didn’t identify as feminine for quite some time. One latter treatment prior to surgery was wearing two sport bras to minimize chest movement, and eventually not wearing any support whenever possible. I was struck by my flat-chested appearance when wearing two bras and noted a sense of congruency not previously considered. I began to talk about my shifting perception of self. Conversations with others about gender identity revealed I did not want to feel forced to choose either designation. Post surgery, I am even more often interpreted as male, and I no longer discount that interpretation because it doesn’t matter; and I rather like it. I have access to a more pluralist perspective of gender. I also now seek out unisex public restrooms to decrease discomfort for others, as well as myself, as I try to understand my nongendered status.
The question of where do I belong also arose. If I am not female or male, is it okay that I am in an all female setting? I am still reconciling the gender binary juxtaposition in my own relationship with society. Public restrooms are problematic, as is meeting people for the first time. A new acquaintance asked whether I prefer to be referred to as male or female. I responded, “it really doesn’t matter. Whatever works for you is fine with me.” I realized that insisting that my gender is this or that is no longer relevant. I am primarily male in identity, but it is nonessential and I describe myself as bigendered.
Regarding sexual orientation, I use “queer or gay.” This is somewhat different than before and a bit more flexible. My partner and I are known as a same-sex, lesbian couple. This fits for her and is what most people perceive us to be. I cannot imagine how that might change. I considered the possibility that if my gender identity is male, perhaps I am bisexual, and that is the farthest I have ventured in redefining my orientation. I am often perceived as a heterosexual male likely due to the ambivalence in gender perception. Because my first name is androgynous, I am more frequently referred to as “he” by both men and women.
Challenges in the Health Care System: Privacy and Disrespect
My primary care doctor treated me for 20 years and supported the next step in treatment. Yet it was a challenge to locate a surgeon willing to do the procedure. For over a year, I discussed my health needs and history with many medical personnel. This was tiring, emotionally and psychologically. When I called surgical clinics, I was often met with terse or dismissive responses to questions, skepticism, and insistence that insurance would not pay for the surgery. Frontline staff would not schedule an appointment once they heard I did not have a cancer diagnosis. The range of questions, tone of voice, and adamant opinion that surgery could not happen was discouraging and disempowering.
Eventually, I saw a male surgeon who had removed a fibroid from one breast in 1991. He reviewed my records, asked thoughtful questions, and agreed to do the surgery. The initial authorization was denied, and I had to file an appeal. As a social worker, I knew how to advocate for myself, yet my resiliency was wearing thin. I needed help from other resources. I asked my chiropractor to write a letter of support. I consulted with an insurance person and asked for input from an attorney. Again, I needed to discuss my condition and reveal private concerns, which went against my very nature. Up to the point of surgery, very few people knew I was having surgery or why. I was exhausted and needed to focus on physical recovery.
Most troubling in this process was that I repeatedly needed to present and defend my medical need. I had to prove that surgery was necessary as a last resort in the norm of standardized care. I was also challenging a gender bias. I was a nonconforming gender and sexual minority having a defining body part be removed. I suspect I was an anomaly for many care providers, including the hospital nurses. It seemed I went against insurmountable odds to get the health care and treatment I needed, with only a few people willing to act on my behalf.
Reconstructing Identity and the Self: Questions, Feelings, and Doubts
I considered what a double mastectomy might mean for me personally and professionally. I wondered how friends and family would react to my changed appearance or assumptions they might make, fearing rejection and reproach. Other times, I felt defensiveness and wondered why I was so angry. I felt confident in my ability to assess my motives, and yet physical pain and despair sometimes left me feeling bereft and alone without apparent reason. When insurance initially denied surgery, I was crushed. When the surgery was approved, disbelief and relief were simultaneous.
I was initially uneasy with my internal conversations about identity and conflicting thoughts. About 6 months after surgery, I could look in the mirror and see my body differently. I realized that I was in transformation. Feelings of fear and bewilderment gave way to calm adjustment. I sought support from trusted friends and family members, but not all at once. I allowed myself to disclose at the pace that seemed respectful of building my personal agency. I realize my stance of bigender or nongender is a radical departure from how society constructs gender. I am still finding the language to describe myself, and transcending gender is a term that fits well.
Once I realized the possibility of surgery as a means to end my physical pain (and to be more gender congruent), I could not, not pursue it. I thought I was at the mercy of the medical profession and temporarily lost the belief that my identity and reality were mine to determine.
Others Responses: Ambivalence, Respect, and Ambiguity
The first month after surgery was most difficult. My partner tempered my anxiety with compassion, humor, and forgiveness. Other peoples’ reactions range from being very supportive to asking questions about the procedure to not talking about it at all, which is not unusual in my circle of family and friends. However, I do find this puzzling at times and suspect this is due to the gender binary. Are they being respectful, or are they experiencing ambiguity or ambivalence? One person said she didn’t know what to say, while another frequently asks questions even 2 years later. Prior to surgery, someone asked whether I was having reconstruction. When I said no, she was surprised, and later in the conversation, brought it up again, which surprised me. This interaction created ambivalence for me but has not affected our relationship. It remains an unresolved conversation that is not an AL, but a point of ambiguity.
The largest barrier is societal systems. There are places that I believe it would not be safe for me to be myself, and that could be considered an AL. It is not a dysfunction for me, but is a dysfunction of systemic and social norms that limits my expression and ability to be safe in the larger world. I adjust as needed to social structures, and thus far, have done so without major discomfort, but is a loss nonetheless.
Conclusion
Bertakis, Franks and Epstein (2009) studied communication and patient and physician gender concordance. Their hypothesis was that female physicians would have a more patient-centered approach, but this did not hold entirely true. In my experience, it was a male surgeon who provided the care needed. I asked my primary care doctor whether the surgeon’s gender impacted affected willingness to do the procedure, and she thought that was probably true. Gender concordance may or may not be critical for positive patient–doctor communication or care and may be a social bias. Unfortunately, I also learned that the medical community is largely uninformed as to what constitutes high risk for breast cancer and fibrocystic breast disease. Social workers can advocate for sexual minority people who may not be gender conforming by identifying patient needs.
My experience is distinct and I likely only attained the medical treatment I needed because of my education and access to resources and social supports that I knew how to use to my advantage. Fredriksen-Goldsen, Woodford, Luke and Gutierrez (2011) examined social work educators attitudes on sexual orientation and gender identity and found that transgender content and transphobia were considered less important than content on lesbians, gays, and bisexuals. I incorporate sexuality and gender into classroom discussion consistently and encourage my colleagues to do the same, with sensitivity for people exploring their own gender identity.
Including transgender theory and challenging social mores and constructions of gender are no small tasks to consider in the evolution and perhaps revolution of the gender binary. Complex social norms and mores perpetuate the idea that people must be either feminine or masculine. This narrative has only scratched the surface and is in no way complete. I do not see what I have presented as a matter of debate, but rather of advancing the conversation. My hope is that readers gain some insight that assists in transforming a perception about gender that informs their practice accordingly.
Footnotes
Acknowledgment
Lake Dziengel thanks the many friends and family who supported this article, especially Karen.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.