Monday 14 November, 2022

Coming Out At The Cancer Centre

Stewart O’Callaghan (they/them) is the founder and director of Live Through This. They started the organisation after seeing a lack of LGBTIQ+ specific support or visibility in the cancer sector.

As LGBTIQ+ people, we often hear that it is important to be your full self at all times. But where does that idea fit when you have cancer? We might think: “Is it safe to come out?”, “Will I be treated any differently?”, “Is it even relevant?”. From my own experiences, I can share that who you are does matter, and your questions or concerns are always relevant.

I am a queer person with incurable blood cancer, diagnosed at 29. I’m 35 now, but when I was diagnosed I was desperate to find support that centred and celebrated my community. A place to speak freely about what was going on in my life. At the time, there wasn’t much of this around, so I ended up struggling alone. 

I was straddling a chasm; one foot in the cancer world, one in the queer world, left somewhere lost in between.

From my experience, community brings care. It is important for any cancer patient to be able to involve the people in their support network and bring them into their cancer experience, from appointments to hospital visits. But what if we are not out to our cancer team? How can we introduce our chosen family when this is different from the usual support structures doctors see? How do we respond if our partners get called ‘a friend’, ‘sibling’, or worse ‘a parent’, by a doctor? Being able to have your loved ones around you at such a crucial time is so important. No-one should have to face cancer alone, or feel like they are going back into the closet to receive good care.

The first thing about sharing who you are is always your comfort and your safety. This might be influenced by what we see in the healthcare environment. Do the staff seem LGBTIQ+ aware? Do they have NHS rainbow badges or lanyards? Was there an equalities statement anywhere? Maybe you’re ready to come out to one nurse, but don’t want to do it to the entire room. 

The bottom line is, you can always ask for what you need. For example, a private chat with your nurse in a side room to speak freely. It’s about protecting your wellbeing. This advice doesn’t only come from my personal experience. Research shows us that LGBTIQ+ people have better experiences of cancer and care when the people delivering it know who we are and are confident in discussing our community or specific needs.

For me, my relationship with my Clinical Nurse Specialist has been my lifeline. Being able to be open about who I am and who my support network is has allowed me to build a bond with her and have more confidence in my care. Given that I have been on treatment for six years at this point, this openness has allowed us to build a mutual respect and friendship that I don’t think would have been possible if I was in the closet. Having this connection makes it easier to flag when I need additional support. By knowing me, my CNS is better at advocating for my needs. But it’s important to remember that you can always ask for help, whether you’re out or not.

Sometimes people aren’t outwardly discriminatory, but their actions can make us feeling uncomfortable or offended. These slights are often referred to as “micro-aggressions”, and can feel tricky to challenge. However it’s important they are called out, and this includes medical staff challenging each other. If you have found a person you have safely come out to, they should be able to help with this and advocate on your behalf. It feels so much better to know that you have someone on your side in those difficult moments.

Being able to have your loved ones around you during cancer is so important. No-one should have to face cancer alone, or feel like they are going back into the closet to receive good care. My experiences led me to create Live Through This, a specialist charity for LGBTIQ+ people affected by cancer. We connect cancer patients from all over the UK and educate healthcare providers on how to best to support our needs. We pull upon research and patient voices to change hearts and minds, and we can tell that it’s working! Cancer staff leave our webinars inspired and informed, keen to get out there and  provide the best care to our community.

So, if you are wondering if it’s relevant to come out, if your questions are valid, or if it will make any difference, from one patient to another, remember:

We’re here, we’re queer, and healthcare is getting used to it.

Check out Live Through This and download the War On Cancer app.

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