The Cost of Being Heard: Chronic Illness, Academia, and Black Women's Labour
A note from the author: What follows is both personal reflection and research insight—my experience of completing a PhD exploring Black undergraduate students' experiences in UK higher education whilst managing chronic illness, and what this dual reality revealed about institutional labour and care.
Sarah Gordon
As I approached the end of my PhD journey, I was often met with platitudes of strength, bravery, and resilience. As wonderful as it is to be recognised and appreciated, this also highlighted an uncomfortable shadow overpowering my experience. I began to understand why these words fell short, as this was not a show of individual resilience and strength. This was about systemic extraction of labour.
Throughout this period of my life, I was caught in a double bind. Experiencing major health complications and lifelong chronic illness diagnoses, whilst simultaneously trying to bring light to the injustices that academia perpetuates. But this is not unique to my experience. It is the reality for countless Black women navigating institutions that demand our labour whilst undermining our wellbeing.
The weight of invisible labour
This labour has a specific texture to it. It is the extra meeting where you explain (again) why being the only Black person in the room affects your participation. It is the emotional management required when academia dismisses your perspective. It is drafting and redrafting emails, editing your speech, calculating how much truth you can tell without being labelled "aggressive" or "difficult". It is having to justify why a racist incident was “actually” racist, whilst the person who caused harm remains comfortable.
It is not only my research that highlights student’s fatigue from repeatedly explaining racism and racialised experiences to uncomprehending staff (Arday 2018; Gordon, 2025). This is not an occasional frustration. It is an ongoing tax on their existence within the university. A communication gap between students and institutional representatives creating an additional psychological burden (Gordon, 2025). A burden that compounded the very struggles students were trying to articulate.
When your body says no: Chronic illness as consequence and complication
This work is often unpaid, unrecognised, and actively harms the people performing it. But here is what institutions refuse to acknowledge: this labour does not just exhaust us emotionally; it contributes deleteriously to our physical health. So, what happens when your body says no?
Audre Lorde knew this intimately. Writing whilst navigating cancer, she asked: "I don't feel like being strong, but do I have a choice?" (Lorde, 2020, p. 5). It is a question I found myself resonating with as my own health declined during my PhD. Our bodies are reverent archivists, unselective and not driven to please. The chronic stress of this labour, the constant vigilance, the emotional regulation, the exhaustion of being unheard, does not simply disappear. I felt this stress accumulate, lodging itself in my body. Research indicates the cumulative impact of navigating racist environments creates ongoing psychological burdens (Gordon, 2025). My experience taught me the harm extends far beyond the psychological. But having chronic illness does not exempt you from this labour, it compounds it. Now you are explaining racism and justifying accommodation needs. Now you are managing your symptoms and managing others' discomfort with your limitations. And through it all, you are expected to be strong.
The strength myth and its cost
The expectation of strength, often placed on Black women in academia, at times felt like an oppressive force rather than a source of empowerment (Gordon, 2025). This myth serves institutions, not us. It means our pain is minimised, our needs are questioned, and our exhaustion is reframed as inspiration. "You are so strong!" becomes another extraction. We are not allowed to be vulnerable, unwell, or tired. Both my research participants and I knew this trap well (Gordon, 2025). The worry was not just about being seen as weak, it was about confirming stereotypes, about giving institutions ammunition to dismiss their legitimate concerns about racism. This is what the strength myth costs us. We become palatable through our pain, inspirational through our endurance, valuable only as far as we can continue producing despite impossible conditions. We are expected to mentor junior students, educate resistant colleagues, sit on EDI committees, and perform "resilience" whilst our bodies are breaking down.
For many Black women in academia, strength is not a choice. It is a survival strategy in institutions that mistake our endurance for consent.
What institutions owe us - beyond Black History Month.
Black History Month often asks us to reflect on these concepts of resilience and strength. But this annual recognition rings hollow when institutions still expect us to perform that same resilience daily, without addressing the systems causing harm. So, what do institutions owe us? Not workshops we must run. Not committees where we are the only ones naming racism. Not praise for our strength. Institutions owe us environments where Black women do not have to choose between our health and our work. Culturally responsive mental health support that acknowledges race-based trauma as real and damaging (Gordon, 2025). Genuine accommodations for chronic illness that do not require us to perform worthiness. Time and space to rest without justification. Lorde wrote about living beyond fear and turning fury into creative energy (Lorde, 2020, p. 8).
But that transformation should not be mandatory or rushed. Sometimes we need to simply be unwell, be tired, be done - without institutions extracting that as a teaching moment. Black History Month is not about celebrating our survival. It is about demanding the conditions where we can thrive.
References
Arday, J. 2018. Understanding mental health: What are the issues for Black and ethnic minority students at University? Social Sciences. 7(10).
Gordon, S.R. (2025). From design to dialogue: a design-informed study on the experiences of Black undergraduates in Higher Education. PhD thesis. University of Nottingham. *
Lorde, A. (2020). The Cancer Journals. 004 ed. London: Penguin Classics.
*Dr Sarah Gordon's thesis will be available open access 10th December 2025, via the University of Nottingham E-prints.