At the intersection of Queerness, Caregiving, and COVID-19

By Austin R. Waters, MSPH

June 3, 2022

It’s summer 2020 and I am living in my hometown, Salt Lake City, Utah, in a house with three housemates. I get a call from one of my best friends, not a text, not a facetime, but a call—which was odd. I answer and he tells me that “I need to tell you something” so I get up from the couch that I become a part of since lockdown began March 2020 and walked outside. My friend, we’ll call him James, then tells me that he just left a cranial radiation appointment and need somewhere to be radiation sick for the next few hours but cannot go back home to his parents where he is living during the pandemic. I immediately say yes and the call ends. Fifteen minutes later James shows up at my front door, bald, pale, with dark circles under his eyes. I was taken aback at how different James looked, even after years of working in a cancer center and interacting with countless patients on and off of treatment, it felt different somehow.

James then spent the next few hours laying in my bed still wearing his baseball cap to hide his radiation sores with a green collapsible vomit bag a few inches from his face. Once James started to feel better, I ask why he couldn’t go back to his parents. James then explains to me in a very long-winded story, interrupted by waves of nausea, about how this tumor is actually a recurrence and the first time he was diagnosed was during his undergrad, when he lived out of state. And that during his first treatment he didn’t tell his parents because he feared they would move him home – a place that he worked so hard to get out of. I knew that James’ parents weren’t particularly accepting of his queer identity and that being who he is was in direct conflict with their cultural and religious beliefs. However, in the past few years James had strengthened his relationship with his parents, at least enough to live with them during the pandemic.

He went on to explain to me that his boyfriend at the time served as his primary caregiver throughout his radiation and chemotherapy during his first diagnosis. Now that he had a recurrence, he had no idea what to do because he knew that his parents would find out about the original diagnosis that he had kept from them if he went home, but he also needed their support. James had previous relied on a chosen family that was substantially limited by the pandemic. While he knew that my household was relatively safe for him in his compromised state, he did not want to burden us with caregiving for him and holding the weight of keeping another treatment regime from his parents.

James found himself being forced to make decisions about his care that were almost exclusively directed by the LGBTQ+ non-acceptance and stigma of his parents. The stigma he felt from his family prior to his diagnosis led him to hide his original diagnosis and ultimately removed his parents, who should have been there to be his primary support system from his treatment. Luckily James finished his treatment with excellent outcomes and is healthy today, however that is not always the case as seen in higher cancer mortality rates for specific cancers among LGBTQ+ populations in comparison to non-LGBTQ+ counterparts.

While these stories are not uncommon in the LGBTQ+ community, they seem to fly under the radar of cancer centers supportive services. James and many other LGBTQ+ patients experience fundamentally different clinical decision making, support networks, and outcomes than their non-LGBTQ+ counterparts. LGBTQ+ populations represent 5.6-7.1% of the US population and LGBTQ+ caregivers make up an estimated 9% of caregivers, approximately 3 million LGBTQ+ caregivers. LGBTQ+ populations are more likely to take on a caregiver role than non-LGBTQ+ counterparts. Yet, very few cancer centers offer LGBTQ+ specific supportive services such as support groups or caregiver support. Further a lack of standardized SOGI data collection leaves LGBTQ+ patients and caregivers invisible to the cancer center and their cancer care team. This is particularly problematic when caregivers like James’s boyfriend and for a brief time, myself, are likely young, unprepared to be a caregiver, and lack financial resources to care for the patient. Cancer centers have been and are currently failing LGBTQ+ patients and their caregivers.