1) Can you share your journey to receiving a lupus diagnosis?
I was diagnosed with lupus at 18, but the story really began a year earlier. At first, the symptoms were subtle enough to be dismissed. I remember sitting in the bath one evening and realising I couldn’t lift myself out. My joints simply wouldn’t cooperate. I had to call for my dad to help me up. Around the same time, I began losing weight despite already being slim. Dry patches appeared on my skin — we assumed it was an allergic reaction. Then came the joint pain, the rashes, and a level of fatigue so crushing it felt like my body was shutting down.
Each symptom on its own was explained away. I was “too young” to be seriously ill. I was “too stressed.” It was “just growing pains.” I was studying for my A-levels, and with African parents, the academic pressure felt doubled. Stress seemed like an easy conclusion for everyone — except me. I knew something deeper was wrong.
It wasn’t until I was hospitalised with joint swelling so severe I could barely move that I was finally taken seriously. Even then, it required multiple appointments, countless tests, and my mum’s relentless advocacy before I received the diagnosis: lupus. Hearing the word was both a relief and a heartbreak. Relief, because I finally had proof that this wasn’t in my head. Heartbreak, because lupus is a lifelong, incurable autoimmune disease. That was in 1994. We are now in 2026, and despite medical advances, there is still no cure.
My journey to diagnosis taught me two powerful truths: that young people can be seriously ill, and that persistence — especially from those who love us — can be lifesaving. It also made me question how many others are still being told they are “too young” or “too stressed,” while their bodies are quietly fighting a battle no one else can see.
2) Have you ever felt dismissed or misunderstood by medical professionals when describing your symptoms?
Yes — more times than I can count. There were appointments where I felt like I was on trial rather than seeking help. My pain was framed as exaggeration. My symptoms were treated as drama. Sometimes doctors spoke around me instead of to me, as though I wasn’t the expert on my own body.
Being a Black woman absolutely shaped those experiences. There is still a deeply harmful stereotype that we are stronger, that we feel less pain, that we can endure more. It’s a myth — and it has consequences. You see it in the hesitation to prescribe pain relief, in the delay to investigate symptoms, in the subtle shift of tone that suggests you’re coping “well enough” when you’re barely coping at all. Gender layered onto that: as a young woman, I was often met with assumptions of anxiety or overreaction. The narrative of “stress” surfaced repeatedly, even when my body was clearly telling a different story. It’s astonishing how quickly legitimate physical symptoms can be filtered through the lens of emotion when the patient is young and female.
And yet, I want to say this clearly: I love the National Health Service. The NHS has saved my life. I owe my continued survival to dedicated clinicians within it. But the system is under-resourced and burdened by bureaucracy, and when services are stretched thin, unconscious bias can flourish in the gaps. Too often, energy goes into managing paperwork and process rather than truly seeing the person in front of you. My experience isn’t about condemning a healthcare system — it’s about challenging the blind spots within it. Because no one should have to fight to be believed while already fighting for their health.
3) What does living with lupus look like on a daily basis for you — physically, emotionally, and socially?
Living with lupus is living with unpredictability. Some days, I can function. I can smile, work, show up, and move through life almost normally. Other days, the pain in my joints feels like my bones are on fire. The fatigue doesn’t politely build — it crashes in, like a brick wall out of nowhere, and suddenly even the simplest task feels impossible.
The hardest part isn’t always the pain; it’s the uncertainty. Planning a life around a body that doesn’t always cooperate is emotionally exhausting. I’ve had to cancel plans at the last minute, miss milestones, and carry the guilt of being the person who “might not make it.” Socially, you do lose things. You lose spontaneity. You lose moments. You learn that energy is a currency — and you can’t afford to waste it.
But I’ve also gained something: boundaries. I’ve learned to protect my peace and conserve my energy without apology. I’m fortunate to have incredible family and friends who understand that “no” doesn’t mean “I don’t care” — it means “I’m managing.”
Professionally, the journey hasn’t always been smooth. My first role after graduation, on a graduate scheme as an insurance broker, was brutal. I was expected to take medical appointments and sick days out of my annual leave. There was little understanding of what it means to live with a fluctuating autoimmune condition like Systemic lupus erythematosus. It felt like my health was an inconvenience.
Then my mum spotted an advert for the Civil Service. It had a reputation for being more people-focused and understanding — and that change altered the trajectory of my life. I’ve since built a meaningful career and a life I’m proud of. Supportive managers make a world of difference. When leadership chooses empathy, people like me can thrive rather than just survive.
And yes — I missed Fresher’s Week at university. Thirty years later, it still annoys me a little! It’s a small thing in the grand scheme of life, but it represents something bigger: the ordinary rites of passage chronic illness can quietly take from you. Lupus has forced me to slow down, to prioritise, and to redefine success. My life may not follow a predictable rhythm — but it is still full, still joyful, and still very much my own.
4) How has lupus affected your mental health, and what kind of support systems (if any) have been most helpful?
Lupus has absolutely affected my mental health. Carrying a chronic illness is heavy. It’s the constant uncertainty. The physical pain. The handfuls of tablets taken daily. The ongoing medical interventions that remind you this isn’t temporary — it’s lifelong. Conditions like Lupus don’t just attack the body; they test the mind.
Depression and anxiety have both knocked at my door at different times. There are days when the grief feels close to the surface — grief for the version of life I imagined, for the experiences I missed, for the ease other people seem to move through the world with. I cry easily. I feel deeply. And I’m honest enough to admit that chronic illness can chip away at your sense of certainty and control.
But alongside that grief is gratitude. I thank God for what I do have, and for what I’ve managed to achieve despite the odds. Both truths exist at the same time: I have missed out on things — and I have built a life I’m proud of. My greatest support has been my family, especially my mum. She fought for me when I didn’t have the strength to fight for myself. She questioned decisions, challenged doctors who were quick to prescribe high-dose steroids without fully weighing the long-term consequences, and made sure my voice was heard when I was too exhausted to speak. That kind of advocacy — that kind of love — grounded me.
Over the years, I’ve also learned to build my own coping toolkit. Exercise, when my body allows it. Meditation to quiet the mental noise. Therapy when I’ve needed a safe place to unpack the weight of it all. And holidays — countless holidays — because joy matters. Rest matters. Having something to look forward to matters. Lupus has tested my mental resilience, but it has also taught me self-awareness, faith, and the importance of support. I’ve learned that strength isn’t about never breaking down — it’s about rebuilding, again and again, with the right people beside you.
5) What barriers have you faced in accessing consistent, quality healthcare — such as insurance, specialist care, medication costs, or transportation?
Accessing quality healthcare with lupus hasn’t been straightforward. There have been barriers at almost every stage — financial, structural, and human. Lupus medication is expensive, and treatment isn’t static. Drugs change, doses adjust, side effects need managing. Even when prescriptions are subsidised, the cumulative cost of managing a chronic illness adds up — especially when you factor in travel to appointments, time off work, and the hidden expenses no one talks about. Conditions like lupus require specialist care — rheumatologists, dermatologists, sometimes nephrologists. But accessing them often means long waiting lists and delayed appointments. When you’re flaring, weeks or months can feel like an eternity. Early intervention matters with autoimmune disease, yet the system doesn’t always move at the speed the illness demands.
In emergency settings, lupus isn’t always well understood. Because it can affect multiple organs and present in complex ways, symptoms are sometimes treated in isolation rather than as part of a bigger autoimmune picture. I’ve experienced inconsistency in care — different clinicians offering different interpretations — which can be unsettling when you’re already vulnerable.
Perhaps one of the most exhausting barriers is simply navigating healthcare itself. Paperwork. Referrals. Chasing results. Advocating for follow-ups. Long waits in uncomfortable chairs when you’re already in pain — and trying to remain polite and composed while your body is screaming. When you’re unwell, the last thing you should have to be is a full-time administrator of your own care.
I’m deeply grateful for the lifesaving treatment I’ve received, but access shouldn’t feel like endurance training. Living with lupus is hard enough. The system designed to support people with chronic illness should reduce the burden — not quietly add to it.
6) Lupus disproportionately affects Black women in both prevalence and severity. How does it feel knowing that your community is more heavily impacted, yet often underrepresented in research and awareness campaigns?
Knowing that Black women are disproportionately affected by lupus is both frustrating and heart-breaking. Conditions like lupus tend to hit us earlier, progress more aggressively, and bring more complications. And yet, despite that reality, Black women remain underrepresented in clinical studies, awareness campaigns, and wider health conversations. There’s a painful disconnect between who is most affected and who is most visible.
It can sometimes feel as though the urgency hasn’t fully registered with the world. When outcomes are worse and diagnoses are delayed, representation isn’t just about inclusion — it’s about survival. Research shapes treatment. Visibility shapes funding. Storytelling shapes empathy. At the same time, I draw hope from the growing awareness around conditions like Sickle cell disease. The increased advocacy, research funding, and public conversation surrounding sickle cell shows what’s possible when communities, clinicians, and policymakers push for change. It proves that momentum can shift.
For me, the frustration fuels purpose. Because when Black women speak openly about lupus — about the pain, the delays, the resilience — we’re not just sharing stories. We’re pushing the conversation forward. And the more visible we are, the harder it becomes for the system to overlook us.
7) Have you noticed gaps in research, clinical trials, or public health messaging when it comes to Black women with lupus?
Yes — and the gaps are significant. Clinical trials frequently fail to include enough Black women, despite the fact that we are among the groups most affected by lupus. That contradiction is troubling. If those most impacted are not adequately represented in research, how can the findings fully reflect our realities? Representation in trials isn’t about optics — it directly influences treatment protocols, drug development, and long-term outcomes.
Public health messaging shows similar blind spots. Black women are rarely centered in awareness campaigns, and when lupus is discussed in mainstream media, our voices and perspectives are often missing. Visibility shapes understanding. When people don’t see themselves reflected, symptoms can be dismissed, delayed, or doubted — both by patients and by professionals.
What makes it even more complex is that exclusion can happen in multiple ways. Just last year, I was turned down for a study because I wasn’t considered “chronic enough.” I was in remission — which, of course, is something to be grateful for — but it also meant my lived experience didn’t meet the study’s threshold. It raises important questions about how we define severity, whose experiences count, and whether remission erases the long-term impact of living with a fluctuating autoimmune condition.
The result is a research landscape that can feel disconnected from the full spectrum of Black women’s experiences with lupus — from diagnosis to flares to remission. Until inclusion is intentional and comprehensive, the gaps will remain not just statistical, but deeply personal.
8) In what ways do systemic inequalities — such as income gaps, environmental stressors, or racial bias in healthcare — shape the lupus experience for Black women?
Lupus doesn’t exist in a vacuum — it intersects with everything. Income disparities, racial bias in healthcare, environmental stressors — each of these adds another layer of difficulty to an already complex condition like lupus. When you’re navigating financial strain, unsafe housing, or the daily realities of racism, your body is rarely at rest. It’s in a constant state of vigilance. And chronic stress isn’t abstract — it has physiological consequences.
Stress is a well-known trigger for flares. So when your nervous system is persistently activated by external pressures, it’s not unreasonable to question how much that contributes to disease activity. I’ve often wondered whether the intense stress of my A-levels — combined with cultural expectations and the pressure I placed on myself — was the tipping point that triggered my lupus. Others have different origin stories: trauma, infection, pregnancy, bereavement. The pathways vary, but stress is a common thread in many of them.
Of course, lupus is multifactorial. It involves genetics, immune dysfunction, environmental exposures — and much of it remains scientifically complex and not fully understood. But what is clear is that social context shapes health outcomes. When structural inequality increases stress and reduces access to timely care, it compounds the burden of disease. What holds us together as a community is not just shared struggle, but shared reality: there is still no cure. And that truth makes it even more urgent to address the social conditions that worsen outcomes. While we may not yet control the biology of lupus, we can — and should — challenge the inequities that make living with it harder than it needs to be.
9) What role do social determinants of health (housing, employment, food security, stress, etc.) play in managing a chronic illness like lupus?
We don’t manage lupus in isolation from the world — we manage it within it. Ongoing crises at home and abroad, housing instability, job insecurity, rising food costs — all of these shape how well someone can live with a condition like lupus. Chronic illness requires consistency: consistent access to nutritious food, consistent rest, consistent medical care. But stability itself has become a privilege.
I’m acutely aware that I’m fortunate. I have a stable job, I own my home, I drive, and I have enough disposable income to enjoy life. That stability makes disease management possible in a way that isn’t available to everyone. I can attend appointments without fearing job loss. I can afford healthier food options. I can prioritise rest when my body demands it.
But many Black women living with chronic illness don’t have that cushion. Eating well costs money. Rest requires time and safe space. Attending specialist appointments may mean unpaid leave, long travel, or childcare arrangements. When survival needs compete with health needs, health often has to wait. The statistics are sobering. Outcomes are worse where poverty and structural inequality are present. And I know, looking at the data, that I am something of an anomaly — not because Black women aren’t resilient or capable, but because access to stability is unevenly distributed. It’s uncomfortable to acknowledge privilege within struggle, but it’s necessary. Lupus may be biological, but managing it is deeply social. Until we address the economic and structural barriers that shape daily life, we cannot fully address disparities in outcomes.
10) As a woman, how have expectations around caregiving, work, or “strength” affected how you manage your illness?
Black women are expected to be strong, responsible, nurturing — no matter what. Even on days when my body aches and my joints are on fire, people still look to me to hold things together. That expectation is exhausting. It means I often prioritise everyone else’s needs over my own health, and that self-neglect can trigger flares. The pressure is amplified by my roles as a married woman and as the first-born daughter; expectations are layered and relentless.
What makes it even more complex is that lupus is largely an unseen disability. I may “look fine” on the outside, but internally I’m managing pain, fatigue, and uncertainty. Unlike a visible disability, there’s no outward signal that I need help or space, and that invisibility adds another layer of responsibility — and isolation. Living with lupus as a Black woman isn’t just a medical challenge; it’s a social and cultural one. The strength we’re expected to show can become a hidden risk to our own health. Learning to claim space for rest and self-care isn’t indulgent — it’s survival.
11) Have you ever felt pressure to minimise your pain or “push through” symptoms because of societal expectations placed on Black women?
All the time. There’s a cultural narrative that Black women “handle anything,” and I’ve learned to downplay my pain — even when I shouldn’t. We’re praised for resilience, but that expectation can be dangerous. Lupus doesn’t care about stereotypes or how strong we’re supposed to be. My body forces me to slow down, to listen, to rest. It reminds me that ignoring pain or pushing through every obligation isn’t bravery — it’s risk. In a way, living with lupus teaches humility. It compels you to put your health first, even when culture and habit tell you to keep going. You learn quickly that disregarding your limits doesn’t just affect you emotionally — it affects you physically, often in irreversible ways.
12) What changes would you like to see in the healthcare system to better support Black women living with lupus?
If we want to truly improve life for people living with lupus, especially Black women, several things need to change. Faster diagnosis is critical — healthcare providers need mandatory lupus training so that early symptoms aren’t dismissed as stress, anxiety, or growing pains. Research must be more inclusive, specifically involving Black women, so treatments, dosing, and guidelines reflect the populations most affected. Medication also needs to be accessible and affordable; managing lupus shouldn’t become a financial burden on top of everything else the disease brings. And perhaps most importantly, care must be culturally competent — clinicians need to listen to and believe patients’ reports of pain and lived experience, rather than assuming we’re exaggerating or “strong enough” to endure. From my perspective, these changes aren’t just helpful; they’re essential for survival and dignity in a life already complicated by an unpredictable, chronic disease.
13) How can policymakers address racial disparities in chronic illness outcomes?
To address the disparities Black women face with lupus, systemic change is essential. We need dedicated funding for studies that focus on Black women’s autoimmune health, so research reflects the people most affected and informs better, more effective treatments. Access to specialists — rheumatologists, dermatologists, and other key clinicians — must improve, particularly in underserved communities; I can only imagine how much harder my journey would have been outside of London. Medical staff also need enforced anti-bias training, so assumptions about our pain or resilience don’t stand in the way of proper care. And public awareness campaigns must be tailored to high-risk groups, making sure that Black women see themselves represented, feel validated, and know when to seek help. From my perspective, these aren’t just policy priorities — they are lifelines.
14) What would equitable healthcare look like for you — in terms of diagnosis, treatment, insurance coverage, and community-based support?
Equity, to me, means being believed the first time I describe my symptoms, without having to fight to be taken seriously. It means early testing and proper screenings, so conditions like lupus can be caught and managed before they cause irreversible damage. True equity includes treatment options that consider long-term wellness, not just quick fixes, and financial support to cover medication, travel, and hospital visits, so managing a chronic illness doesn’t become a full-time struggle. It also means having access to community networks that provide tailored support for Black women, spaces where our experiences are understood, validated, and shared. Equity isn’t a privilege — it’s the foundation that allows people like me to live with dignity, health, and hope.
15) How can medical education better prepare doctors to recognise lupus symptoms in diverse populations, especially Black women?
Medical education can better prepare doctors to recognise lupus in diverse populations, especially Black women, by focusing on both knowledge and empathy. Clinicians need training to recognise how lupus presents on darker skin, since rashes and other visible symptoms often look different than the textbook images typically shown. They also need to learn to listen without bias, understanding that assumptions about pain tolerance or resilience should never influence diagnosis or treatment. Including case studies that feature Black women ensures future doctors see our experiences as real, not exceptions. Trauma-informed care should also be a core part of training, helping clinicians approach patients with awareness of how past experiences and systemic inequities affect interactions with healthcare. From my perspective, preparing doctors this way isn’t just helpful — it’s essential for equitable, competent, and compassionate care.
16) If you could speak directly to global health leaders working on the Sustainable Development Goals, what would you ask them to prioritise for Black women with chronic illnesses like lupus?
If I could speak directly to global health leaders working on the Sustainable Development Goals, I would ask them to prioritise diseases that disproportionately impact Black women, like lupus, and to ensure we are included at every level — in research, in leadership, and in decision-making. Healthcare equity can’t just exist in theory; it must be reflected in funding, access, and education. We don’t need sympathy. What we need is to be listened to, seen, and represented. We need visibility, meaningful investment, and empathy that translates into real action — because our health outcomes, our quality of life, and even our survival depend on it.