The unseen work of patients who are stigmatised: and five ways we can do better
When we think about healthcare, we usually picture doctors, nurses, and clinicians doing the work. But there’s another kind of labour happening every day. Less visible, but just as vital.
It’s the work patients do. And no one does more of it than communities that are stigmatised and marginalised.
At the recent Spotlight on Stigma webinar, facilitated by Dr Elena Cama and Scientia Professor Carla Treloar from the Centre for Social Research in Health (CSRH), researchers and advocates from across the LGBTQI+ sector explored this hidden labour.
From disclosing sensitive information, vetting clinics for safety, and educating health professionals, to carrying emotional burdens from stigma and exclusion, it is endless.
Re-watch the webinar below, or scroll down for our key learnings.
Understand the difference between patient work and inclusivity labour
Everyone, no matter their background, does patient work. Think booking appointments, managing medications, tracking symptoms. But inclusivity labour is the extra work marginalised people do just to feel safe, respected, and seen.
“Inclusivity labour includes things such as the work of having to educate your health provider about your specific needs or identity, looking for cues that care is safe—like rainbow flags, lanyards, or posters—and deciding whether it is safe to reveal or conceal statuses or practices,” Anthony K J Smith, Research Fellow at the Centre for Social Research in Health and Lecturer at the School of Population Health, Curtin University.
Patients shouldn’t have to do this. Yet many must decide on the spot whether to disclose personal information (like HIV status, sexual orientation, or gender identity) based on how safe the clinician feels. It’s an emotional risk calculation built into every appointment.
Use this to: Review your service through the eyes of someone who might not feel safe. Ask: What signs show this is an inclusive space? Do staff know how to respond when someone discloses something personal? Are patients having to do extra work to get the care they need? Then, act on what you find. Train your team and fix the gaps.
2. Remember that there’s no “normal” to be brought into
Too often, inclusion is imagined as "bringing in" the marginalised and inviting people into a so-called mainstream. But as Professor Christy E. Newman pointed out, this assumes that normativity exists, and that diversity is something outside it.
“The concept of inclusion typically imagines minority populations as located outside of a centre of society… but that’s clearly not accurate. There is no inside and outside to society. Diversity is all through it,” Professor Christy E. Newman, Centre for Social Research in Health and Deputy Dean Research, Faculty of Arts, Design and Architecture at UNSW Sydney.
Use this to: Audit your forms, policies, and programs. Are they built around assumptions of a ‘default’ patient?Add open questions to forms. Design systems that reflect the reality that diversity isn’t outside the norm, it is the norm.
3. Start future proofing inclusive care
Christy’s Queer Generations study presented during the webinar revealed major differences between LGBTQ+ people born in the 1970s and the 1990s in Australia. The older group tended to accept “just good enough” care. The younger group? They expect more, and will actively fight for it.
“People born in the 70s... tended to be a bit more accepting of care being just kind of good enough... The 1990s-born participants... were keenly aware of their rights and... disappointed and quite judgemental if a clinician wasn’t ready,” Professor Christy Newman
Use this to: Talk to younger patients and community members about what affirming care looks like to them, then update your training, language, and service design based on what you hear. Don’t wait for a complaint to evolve. Be proactive and make inclusion part of your quality improvement process.
4. Encourage and invest in peer networks
Loc Nguyen shared a powerful and deeply personal story as a trans woman, describing how the labour of healthcare started long before she entered the system. For her, it began at home, navigating stigma from family and slowly finding understanding. She spoke movingly about how Buddhist stories helped her mother come to terms with her identity.
But one constant throughout her entire journey has been the importance of peers: people who shared trusted provider names, information about hormones, and emotional support. This wasn’t a luxury. It was survival.
“It was easy to look things up online, but to have another peer actually vet a service, that was so important. To truly know that care was affirming, accessible, and free from the risks of stigma. That knowledge passed from one trans person to another really became a lifeline,” Loc Nguyen, public health professional with experience across NGOs and government.
Use this to: Invest in peer-led health models and formally recognise peer support as essential infrastructure, not just informal extras. Back these networks with proper funding, training, and respect.
5. Know that clinician mistakes can become opportunities for repair
Healthcare workers aren’t expected to get it right every time, but they are expected to own it when they get it wrong. Loc spoke about moments of being misgendered or dismissed, and how the clinicians who repaired the harm became some of their most trusted.
“There were moments in my healthcare journey where I was misgendered, even after clearly stating my gender during intake, and it was deeply painful. Sometimes, I walked away because the emotional burden was too much. But other times, I paused and asked: was this ignorance or intent? If I felt safe, I’d address it with compassion. And when clinicians took accountability and listened, those moments of repair became some of the most affirming care experiences I’ve had, built on trust, respect, and shared learning,” Loc Nguyen.
Use this to: Train clinicians in how to respond when they make a mistake. Humility, active listening, and accountability can transform a moment of harm into one of connection.
About the Spotlight on Stigma series:
Spotlight on Stigma is an occasional seminar series presented by the Centre for Social Research in Health, founder of Tackling Stigma in Healthcare The series brings together national and international experts to explore the latest thinking in stigma science, policy, and practice. Through these conversations, we aim to build shared literacy around stigma, elevate lived experience, and advance efforts to reduce the harmful effects of stigma in healthcare.