We know that caregiving of chronically ill adults is far more common among sexual and gender diverse (SGD) people than their cisgender or heterosexual peers. SGD caregivers are more likely to be friends and “chosen family” rather than partners or biological family members. Both partner and chosen family SGD caregivers often lack access to social support, which can increase stress and feelings of isolation.
In terms of my cancer journey and who I am. I was supported the whole time … I always had someone to turn to if I needed some sort of emotional support. Whereas for my partner, she didn’t really have anyone to turn to…. Being a cancer supporter, there’s no support system to teach you how to do it, and how to take care of yourself at the same time (T: AYA queer cancer survivor)
QC recently spoke to T, an AYA (adolescent and/or young adult) queer cancer survivor and their partner S. The couple shared with us their experience with cancer and caregiving. S wasn’t out to her family at the time of T’s diagnosis. This meant that navigating the complexities of T’s treatment was difficult and stressful as S often had to choose which appointments to attend. S also wasn’t able to access emotional support at home.
For both patients and carers, dealing with the intense period of diagnosis and treatment often means putting aside the impact on physical and mental health and relationships. T told us:
I don’t even think that S had time to think about herself – like she was just in survival mode at that point and I think she still is. Personally, I recently learned that cancer treatment is temporary. But cancer survivorship is indefinite.
T has finished their cancer treatment, and their prognosis is good. We asked them what they would like to share with the community about their experience, and in particular tips for other queer caregivers.
What should carers be aware of?
- Nourish your queer identity: Find comfort in the community/relationships that understand the
- intricacies of your gender and/or sexual identity. This applies to every aspect of your identity.
- Individual therapy: Take care of yourself and your mental health. Being a caregiver is difficult! It’s okay to acknowledge that and seek help.
- Enjoy the small things: Just because someone you care about has cancer, it doesn’t mean you both can’t enjoy the small stuff. The happiness you find in your life is nothing to feel guilty about. Your happiness does not make the cancer any smaller/worse.
- TLDR: Take care of yourself – mentally, physically, your hobbies/interests, etc. – and don’t lose yourself!
What do you think would have helped you, or would help you now?
- For healthcare professionals: Current and future healthcare providers should have 2SLGBTQIA+ knowledge and apply this to care.
- Mental health support: Given at the same time I was diagnosed as well as cancer specific therapists/social workers/support groups for patients and caregivers.
- Information: A hub that provides information about resources – it can be overwhelming to look at a thousand different pages.
- Advocacy: Cancer organizations should connect with community organizations rather than remain in the “cancer bubble”; teaming up with local influencers, schools, colleges, and universities, to spread awareness and information.
- TLDR: Representation, advocacy, education, and presence.
Can you share some sources of support you found useful?
This journey can feel isolating, and these groups can help:
- Young Adult Cancer Canada Caregiver page
- AYA Canada
- On the Tip of the Toes – organizes therapeutic adventure expeditions for AYA people affected by cancer
- Project Koru – Supporting AYA people affected by cancer with power of community and the outdoors
- Your local hospital or cancer agency cancer groups and psychosocial support
We’d like to thank T and S for sharing their experience with us and we send them love and support as they continue this journey together.
Sources:
- Boehmer, U., Clark, M., Heeren, T, Showalter, E. Fredman, L. (2018) Differences in Caregiving Outcomes and Experiences by Sexual Orientation and Gender Identity. LGBT Health. 5(2).
http://doi.org/10.1089/lgbt.2017.0144 - Funders for Lesbian and Gay Issues, “Aging In Equity: LGBT Elders in America,” (2004) and National Alliance for Caregiving (NAC) and AARP, Caregiving in the U.S. (2020
- Power R, Ussher JM, Perz J, Allison K, Hawkey AJ. “Surviving Discrimination by Pulling Together”: LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support. Front Oncol. 2022 Jun 24;12:9180
- Shiu, C., Muraco, A., Fredriksen-Goldsen, K. (2016) Invisible Care: Friend and Partner Care Among Older Lesbian, Gay, Bisexual, and Transgender (LGBT) Adults. Journal of the Society for Social Work and Research 7(3), 527-546.
https://doi.org/10.1086/687325
