Queer Identity and Survivorship: Navigating Gynaecological Cancer

Elizabeth Coleman argues that it is time to queer the gynaecological cancer narrative.

There are no narratives on queer women and gynaecological cancer. This is what I discovered as I trawled the internet looking for support while figuring out how to be both queer and a gynaecological cancer patient. The complex ways in which these two identities intersect are particularly nuanced and often go unrecognised and unappreciated, not least by medical practitioners providing cancer care to members of the queer community.

Having spent over twenty years as one of the non-beautiful people, frequently subjected to people’s thoughts on the undesirability of my body, I am well-versed in not fitting in. Despite this, I found peace in a body that, although still far from what society wanted, served me well. I could take pleasure in being comfortable taking up space, refusing to shrink both physically and verbally in a world that often told me I was too much. I was able to do everything I wanted, giving space to lovers who delighted in my body, taking its pillowy softness as comfort in a world of hard edges.

And then my body began to fail.

As a person with PCOS I was well adjusted to pains and irregular menstrual cycles, but at the start of 2016 I began to bleed almost constantly. I walked into my gynaecologist’s appointment sure that ‘endometriosis’ was going to be her pronouncement. ‘Hyperplasia’ and ‘possible adenocarcinoma’ was what I heard instead. I was scheduled for a D&C and the confirmation came: my cells had begun to corrupt.

After my first biopsy I lay drugged and in pain wishing that I had a partner to comfort me. I’ve wished it several times since, mostly when the fear hits, or when the side effects of my medication left me wiped out and drained of all resources: wouldn’t this be easier with someone who loved me by my side?

That initial biopsy and diagnosis became the start of two years of surgeries, of coming out (sexually and medically), and of learning to live in a body that felt as if it was betraying me. It still feels that way.  You soon learn that when one part goes, others follow. I discovered that there are very few resources for queer women with gynaecological cancers. All the literature aimed at young women focuses on fertility-saving advice. All the dialogues on sex exclusively concern penetrative penis-in-vagina sex, and any exchanges you have with women in support forums tend to be about how their male partners may not find them attractive or how they don’t want to make them wait to have sex again. These conversations leave queer women out in the cold, wondering how they are ever going to find support and relate to the dominant narrative.

Queer women fair better when it comes to breast cancer. Due to the high frequency of diagnosis and many queer icons having endured the condition, there are a number of available narratives and support services available for queer breast cancer patients to engage with. While this is positive, one must question why we aren’t also pushing for treatment, knowledge and narratives for queer women with gynaecological cancers.

As a patient, you exist at the intersection of many subject positions, but medics are not trained to deal with intersectional identities, much less non-heteronormative patients, who find themselves needing to come out again and again, in each new clinical encounter. Between ensuring that gynaecologists are aware of specific sexual health needs and wanting to be sure that a doctor (under the impression that queer women don’t need reproductive organs) won’t rush you into surgery, it’s a balancing act – timing is everything.

At the time of my diagnosis, I was living overseas in Turkey. Living in a country where not only is heteronormativity ever present, but where virginity is prized means a lot of coming out to nurses who might need to prep you for procedures. There’s an obsession with hymens here. The questions that medics ask are flawed with heteronormative assumptions. Asking if you’ve ever had sex is not the same as asking if your vagina has ever been penetrated, which is not the same thing as asking if you have a hymen. This also assumes that you also don’t get caught up in a conversation on the social construct of virginity with a curious doctor, or at all with a homophobic doctor. Which brings me back to bodily autonomy: the ability to say yes to the touch of a lover, and to say no to that of a doctor who believes you have no rights.

I needed my queer community’s voices. I wanted to know that as a non-heterosexual person becoming less beautiful, I would still be worthy. I didn’t want middle aged heterosexual women to tell me how to feel about my scars, or how they kept their husbands happy. I wanted women who went to bed with other people with vulvas and uteruses to tell me how they navigated their intimacy, how, even though we belong to a community that stereotypically cares less about body image, I wasn’t alone in wanting to cry over the scars that littered my body.

I wanted to know how those people, my people, dealt with disclosing a history of an illness to others who may develop it themselves at some point. There are some scars that can’t be dismissed; knowing every time I undress for a partner they’ll see the history written on my body is hard. There are times when I wonder if I’ll ever feel comfortable showing the scars to lovers.

What I found helped was talking to other queer women who knew that the way they loved, the way they made love, wasn’t tied to some antiquated notion of what men do and women do; women who’d been through chronic and serious health issues with same-gender partners at their side and navigated the coming out dance; queer women who had gone through their own gynaecological traumas. People who were open about what it means to be a woman-loving-woman and shoulder the burden of ill health.

What I wanted was more of these women in my life. Not that I wanted the people I loved to endure the condition, but I wanted to find a community of similar people who’d already coincidentally been through it. Although support groups for cancer survivors exist, none of these groups tend to deal with queer women specifically. There has been some progress; if we look to the American context we can see that groups for LGBTQ+ women with breast cancer are becoming more prevalent. Unfortunately, that’s as far as I got in my search for queer cancer support: breast cancer groups. Even online there are no specific resources for queer women with gynaecological cancers; I went through the process largely alone. No one to hold my hand at appointments or help me back to a fifth-floor walk-up after surgery. No way to connect to the other women on the ward, young and mourning the loss of their fertility, or those, decades older, who were ready to be done with the inconveniences of uteruses. All who very likely got advice on resuming sex in the traditional heterosexual way.

Even though I was out to my doctors, no clinician thought to check in with me about returning to sexual pleasure.  Or, for that matter, how it would be different. The standard advice for post-hysterectomy sex is to wait six weeks to have penis-in-vagina sex. However, this ignores the multitude of ways in which queer people engage with their bodies, and the varied forms of sex that we have: we need advice on when it’s considered safe to return to a full range of sexual activities. But if medics are not trained, not familiar with all the diverse ways queer people use their bodies for pleasure, how can this be delivered? As one survivor in an aggregate review noted, “It would have gone much better if there was some indicated awareness that as a patient I had a sexual orientation…” (Kamen 2018, 57).

I find myself meditating on the same few thoughts: is our care affected when we disclose our sexuality? What would be gained by medics having a better understanding of how sex between two women works? How many of the staff I disclosed to understood why I was disclosing? And to what extent was the possibility of that disclosure a privilege of my being foreign?

What is needed is cultural competency amongst clinical healthcare workers. Lack of cultural competence means patients are arriving with trauma already imposed on them by the medical profession. We need our medical teams to know that not all people are straight, cisgender or monogamous. Yes, we want to be given the necessary information for resuming sexual activity, but we are not an information service to satisfy your curiosities.

What it ultimately comes down to is that there are no support services for queer people with gynaecological cancers. This is what we need: services that disregard the heteronormative and body-normative. No one is going to hand this to us: as always, the queer community must make their own path. Our culture is to take the norm and reform it, and in doing so rise: it is time for us to queer the gynaecological cancer narrative.

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Elizabeth Coleman received her B.A and LL.M from the University of Keele. Her primary research interests lie in gender and intersecting identities, and her current passion project is the removal of heteronormativity from teaching materials. She is currently to be found in Turkey, by way of South Korea, where she lectures in EFL and medical English.

References:

Kamen, Charles. “Lesbian, Gay, Bisexual, and Transgender (LGBT) Survivorship.” Seminars in Oncology Nursing, Vol 34, No 1 (February), 2018: pp 52-59.

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