The Beauty of Rebuilding: Sexuality, Femininity, and Identity in the Midst of a Cancer Diagnosis

The cancer came. The cancer took the hair on my head, my eyelashes, my energy, and the last of my libido. I realized how much I had taken my femininity for granted. The girl that once could give two shits about hair, makeup, and sex — the prepubescent girl that wanted a flat chest and dreaded the arrival of her period — suddenly wanted it all. I wanted to feel pretty. I wanted to feel desired, not only by others but by myself. One does not have to wear makeup or have a period to be a woman. None of what I lost, nor what I wished to have, defines femininity. However, I lost my identity. A large part of this identity demolition revolved around the physical changes that the cancer and its treatments caused.

 

I pulled chunks of long, matted hair from my head in my senior-year college apartment, staring at the bags under my eyes and my chest stained with the adhesive of dozens of EKG stickers. With each lock of hair, with each glance at my swollen limbs and hairless surfaces, a pillar of my already fragile identity came crashing down. My cancer diagnosis bulldozed through each brick and left me with no other choice but to rebuild my notion of self from the ground up.

Identity struggles in the midst of disease hold a constant presence among my robust female friendships with fellow young cancer patients. Collectives of young women with cancer form a crucial aspect of identity reformation amid cancer’s destructive grasp. Through raw, honest conversations with my female counterparts, I discovered that my personal experiences with chronic illness were also political. In the hands of a healthcare model whose practices were isolating and degrading, I found companionship in the commonality of struggles between myself and other young women with chronic illness. The experiences of this collective closely mirror my own experiences of sexism in medicine. In an interview I conducted a few months ago, a fellow sarcoma patient, Deja, echoed that self-advocacy is often a matter of life or death in a system where our symptoms are minimized and our voices are silenced. Another friend, Tasha, reiterated my sentiments on appearance:

Appearance is also a way that you portray how you perceive yourself to the world, and when you aren't perceived how you perceive yourself or look how you perceive yourself, that's really hard on understanding who you are as a person.

“It hurts to look in the mirror and not see yourself,” she admitted. As a collective, we unanimously carry our struggles to regain autonomy and identity, regardless of how our identities differ from one another. Female collaboration in medicine—among both patients and practitioners—is vital in a system where women historically face disproportionate rates of misdiagnosis, delayed diagnosis, and outright dismissal. Female patients deserve practitioners whom they trust. Practitioners can work towards providing effective and equitable treatment through both close listening and narrative-informed care. When women spend less time fighting for proper care, they can dedicate more time to rebuilding the parts of their life that disease has crumbled, such as their relationships with gender identity, their bodies, and their loved ones.

Early on, in a search for answers to my chronic symptoms, I lost sight of who I was and hated my body for the pain it caused me. I was unable to dedicate time to my spiritual and emotional wellbeing. As a result of months of dismissal from medical professionals, I had to be “on” twenty-four seven, both advocating for myself in a broken system and staying afloat with what I would later find out was a terminal disease (one that would have killed me within a couple of weeks if I had not taken myself to the emergency room). After I began treatment, formed a team of trusted providers, and established expectations for my care with these providers, I finally set foot on my path toward psychological restoration despite my body’s cascade of changes.

 

Never did I think I would want to have my period back, nor did I think I would wear makeup as much as I do now, but I have found what works. Doing my makeup and wearing clothes that make me feel good are two strategies that have helped me regain my identity or, better yet, mold the new identity that my diagnosis has left me with. In many ways, I am the same person that I was before my diagnosis, but in more ways, I am different. I am more physically exhausted than I have ever been. I sleep more than I ever have in my life. But I have never been more awake. My spirit has finally broken out of the chokehold certain ideologies had on me.

This is not to say that I do not wallow in the ruins some days. As I wallow, I cry and hope that my tears themselves nourish the uneven ground on which I stand. “My tears…,” I suggest to myself, “...will provoke flowers to grow within the cracks of the cemented remains.” While there have been weeks where I allow the crying to take me over and produce a flood, rather than the gentle stream of a watering can, other days I find shedding a few tears to be healing. I allow the warm tears to roll across my face, and I wish to hug myself, to be there for the younger version of me and tell her that she will unbecome and become again and again, finding glimpses of joy even behind streams of tears.

I still struggle with my sexual identity. I still struggle with my femininity. Cancer still challenges my self-image and forces me to adapt to an ever-changing identity. However, every day, I get a glimpse of me in a way that no one else does — a glimpse that looks in the mirror and remembers the ruins, accepts them (with the occasional rebellion), and celebrates the versions of me that are alive today.

To some, I am a statistic or a problem to solve. To me, I am a woman, a lesbian, a cancer patient, and a young adult. When we look at our countless labels, we recognize that labels fail to capture the nuances of our complex identities. I recognize the function of labels. They are tags we create in an attempt to understand what we cannot understand. However, labels also bring with them a great deal of stereotypes and misunderstanding. “I am a woman, a lesbian, a cancer patient, and a young adult.” I describe myself with these labels because these are the words that come closest in describing my lived experiences and reality; however, these words alone fail to capture the depth of my identity. Like a seagull often symbolizes the ocean without having the capacity to reach the ocean’s depths, labels symbolize us as humans without diving beneath our surfaces. As a result of this, we make our own assumptions and stereotypes of what a label says about the depths that it does not reveal because we feel the need to fill the gaps of knowledge.

I have lost count of the number of times I have been told, “You don’t look like a cancer patient” or “You don’t look like a lesbian.” These statements suggest that there is a long list of qualifications to be both a cancer patient and a lesbian, and that I fail to check the boxes. The person who makes the statement believes that the labels “cancer patient” and “lesbian” have specific physical attributes that I do not possess.

A “cancer patient” is bald, frail, bed-bound, older, and paler. I walk by a friend outside a bar in Madrid. I am traveling, dressed my best at a bar at 10 p.m., and I have a smile on my face. “You don’t look like a cancer patient.” What she doesn’t know is that as I work hard to hold a smile, my back throbs from the tumors that invade my spine and hips. My newest treatment seems to be failing like the prior ones had. When I hear this statement, at least once a week, something inside of me entangles in fury. I understand that the phrase appears harmless and even kind. However, statements like this, on the basis of physical appearance alone, diminish patients’ experiences with illness, as if all of the pain and challenges that one experiences on a daily basis due to illness do not exist because their outer appearance makes them pass as a “healthy person.” I do not want people close to me to ignore my illness because I cannot. I can put on as much makeup as I want, dress up, work out, and go about my day like any other “healthy” twenty-something-year-old I know; however, these actions do not ease my illness nor the pain it causes me. These actions are my attempts to live despite my diagnosis, not to pretend that it does not exist.

Therefore, when you tell someone that they don’t “look like a cancer patient,” you feed into the stereotypes labels provoke and fail to acknowledge the amount of work that goes into living every day with a disease that wants you dead. My recommendation, as a patient who has heard it all, is to exchange the phrase “you don’t look like a cancer patient” or “you don’t look sick” for something that acknowledges the patient’s personal experience. For example, “I see how hard you are working every day, and I am proud of you.” Avoid making statements that negate identity and limit it to a set of stereotypes, such as physical appearance.

Only we as individuals know what label we give ourselves holds beyond the surface of this label. For example, one “cancer patient” may associate this identity with their subtype of cancer, resilience, community, and holistic medicine. Another “cancer patient” may associate this part of their identity with the support of loved ones, hope, their religious beliefs, changes in their body, and hospice care. Each person’s relationship with the term “cancer patient” will differ because each person holds a different set of experiences and identities that interact and form unique perceptions of cancer care and a cancer diagnosis. Practitioners and caregivers must dedicate time to asking and listening to patients’ understanding of their own identities, while also learning to be in tune with their own identities beyond the white coat. Through extending medical care to consider patient narratives and patient perceptions of identity, we move toward achieving holistic care that aims to heal the individual even in cases where a cure is not possible.