The Silent Struggle: Why South Asian and Afro-Caribbean Women Carry a Heavier Burden of Autoimmune & Hormonal Disease

In my welcome post, I spoke about women being dismissed, unheard, and passed from specialist to specialist without answers. This post is the follow-up that many of you have been waiting for — because the dismissal is not random, and it is not in your head. For South Asian and Afro-Caribbean women, there is a biological, cultural, and systemic story behind it. And the science is finally telling it.

“Tired, inflamed, dismissed, and told you’re ‘fine’? If you’re a South Asian or Afro-Caribbean woman, your body may be trying to tell you something medicine has been too slow to hear.”

The evidence is clear, robust, and undeniable: South Asian and Afro-Caribbean women are disproportionately affected by certain autoimmune and hormonal conditions. They experience earlier onset, more severe symptoms, and a higher overall burden of disease than their White counterparts. And here is the part that makes this even more urgent — they are also among the most underrepresented groups in the very research that is supposed to help them.

“The medical system wasn’t built for your body. Here’s what the science actually says — and what you can do about it.”

Today, we are stripping away the medical jargon to look at what the latest peer-reviewed research actually says about our bodies — and how we can use this knowledge to advocate for the care we truly deserve.

The autoimmune reality: striking earlier and harder

Autoimmune diseases occur when the body’s immune system mistakenly attacks its own healthy tissues. While 80% of all autoimmune disease patients are women, the burden does not fall equally across all ethnicities. Two communities in particular carry a disproportionately heavy load: South Asian women and Afro-Caribbean women.

A landmark UK primary care study analysing 4.5 million patients revealed a startling truth: individuals of South Asian descent are diagnosed with immune-mediated diseases at a significantly younger age than White adults [1]. Rheumatoid Arthritis (RA) — a condition causing painful joint inflammation — is diagnosed at an average age of 48 in South Asians, compared to 56 in White populations [1]. That is nearly a decade earlier. More years of living with pain. More years of potential joint damage. More years of being told you are “too young” for this to be serious.

For Afro-Caribbean women, the picture is equally — and in some conditions, even more — stark. UK data show that people of Black Caribbean ethnicity have the highest incidence of Systemic Lupus Erythematosus (SLE) of any ethnic group [2]. Globally, women of African descent with SLE are more likely to develop lupus nephritis — the most dangerous form of the disease, affecting the kidneys — have higher disease activity scores, and experience greater organ damage than White patients [3]. SLE ranks among the top causes of death in Black women aged 15 to 44 — a fact that is rarely spoken about loudly enough [3].

Research from the California Lupus Epidemiology Study further confirms that Asian patients with SLE also experience more severe disease manifestations and accumulate greater organ damage over time compared to White patients [4].

And then there is the thyroid — that small, butterfly-shaped gland in your neck that quietly controls your metabolism, your energy, your mood, and your weight. Autoimmune thyroid disease, particularly Hashimoto’s thyroiditis, is incredibly prevalent among South Asian women. A recent study from New Delhi found that nearly 80% of hypothyroid patients had elevated anti-thyroid antibodies confirming autoimmunity as the root cause, with women affected three times more often than men [5]. If you have been struggling with fatigue, weight gain, brain fog, or low mood and been told your thyroid is “borderline” — please push for a full thyroid antibody screen.

A landmark moment: PCOS is now called PMOS

This is something I am particularly passionate about sharing, because it is brand new and it matters enormously.

In May 2026, following a 14-year global consensus process involving over 50 patient and professional organisations — including the Endocrine Society — the condition we have long known as Polycystic Ovary Syndrome (PCOS) was officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) [6].

This is not just a cosmetic change. It is a profound clinical and scientific reframing.

The old name — “polycystic ovary syndrome” — was deeply misleading. It implied the condition was primarily about cysts on the ovaries. But research has now confirmed there is actually no increase in abnormal ovarian cysts in this condition at all [6]. The name caused decades of missed diagnoses, inadequate treatment, and women being dismissed because their ultrasound looked “fine.”

The new name, PMOS, finally reflects what this condition truly is: a complex, long-term hormonal (polyendocrine) and metabolic disorder that affects weight, skin, mental health, fertility, and cardiovascular risk — far beyond the ovaries.

“For too long, the name reduced a complex, long-term hormonal disorder to a misunderstanding about cysts. This contributed to missed diagnoses and inadequate treatment.” — Professor Helena Teede, lead researcher, The Lancet, 2026 [6]

For South Asian women, this name change is particularly significant. PMOS affects 1 in 8 women worldwide — over 170 million people [6]. And South Asian women bear a disproportionately high burden. A 2025 global analysis found that the prevalence of PMOS in South Asia is rising sharply, with India experiencing the highest burden of any country [7]. South Asian women with PMOS often present at a younger age and exhibit more severe symptoms — particularly profound insulin resistance — compared to Caucasian women [8].

The three-year transition period is now underway, with full implementation expected in the 2028 International Guideline update. If your doctor still uses the term PCOS, that is fine for now — but know that the science has moved forward, and so should the conversation about your care.

Endometriosis: the silent delay for women of colour

While we are discussing hormonal and pelvic health, we must talk about endometriosis. Endometriosis is a chronic condition where tissue similar to the lining of the womb grows elsewhere in the body, causing severe pain, inflammation, and potential fertility issues.

In the UK, it takes an average of 8 years to receive an endometriosis diagnosis. But for women of colour, that wait is often significantly longer. Research indicates that Black women are 50% less likely to be diagnosed with endometriosis compared to White women, despite presenting with similar symptoms [21]. South Asian women also face profound diagnostic delays, often due to cultural taboos around discussing menstrual pain and a lack of culturally competent care [22].

If your periods leave you bedbound, if you experience severe pelvic pain, or if intercourse is painful — that is not “normal” period pain, and it is not something you simply have to endure. Please push for a referral to a gynaecologist.

The perimenopause nobody talks about

Perimenopause — the transitional phase before menopause — is finally receiving the public attention it deserves. But the conversation is still overwhelmingly white.

The reality is that South Asian and Afro-Caribbean women often experience perimenopause differently. Research shows that Black women tend to reach menopause earlier than White women and often experience more severe vasomotor symptoms (hot flushes and night sweats), sleep disturbances, and mood changes [20]. South Asian women, meanwhile, often present with significant joint and muscle aches, fatigue, and low mood, which are frequently misattributed to other causes [20].

Crucially, women from ethnic minority backgrounds are significantly less likely to be offered Hormone Replacement Therapy (HRT) [20]. The British Menopause Society has explicitly highlighted this disparity, noting that cultural taboos, language barriers, and a lack of representative educational resources contribute to women of colour suffering in silence [20]. If you are over 40 (or sometimes younger) and experiencing unexplained anxiety, joint pain, brain fog, or changes to your cycle, perimenopause must be considered.

The “thin-fat” phenotype: why BMI alone misses the picture

Much of the metabolic burden in South Asian women comes down to a unique biological trait that is rarely discussed in the consulting room: the “thin-fat” phenotype.

South Asians have a genetic predisposition to store fat around their internal organs — what we call visceral adiposity — rather than just under the skin. This means that even if a South Asian woman appears slim or has a “normal” BMI, she may still carry a high level of visceral fat. This fat is not passive. It acts as an active endocrine organ, pumping out inflammatory signals and driving insulin resistance — the very mechanism that underlies PMOS and significantly elevates the risk of Type 2 Diabetes and cardiovascular disease [8].

This is why BMI alone is an inadequate screening tool for South Asian women. Waist circumference, fasting insulin levels, and HbA1c are far more informative markers of metabolic health in our community.

The missing piece: Vitamin D — and why some women are at even greater risk

If there is one piece of the puzzle that is entirely within our control to address, it is Vitamin D.

Vitamin D is not just a vitamin for bone health. It is a powerful hormone that modulates our immune system, regulates insulin, and plays a critical role in reducing inflammation. Yet Vitamin D deficiency is at epidemic proportions among both South Asian and Afro-Caribbean populations living in Western countries — with severe deficiency affecting up to 60% of South Asians and over a third of British Afro-Caribbean adults, depending on the season [9] [10].

A large UK Biobank analysis of over 4,000 British Afro-Caribbean adults found that only 15.9% had sufficient Vitamin D levels, with over a third classified as frankly deficient [10]. The researchers concluded that year-round supplementation and culturally appropriate dietary guidance should be considered a public health priority for this group — yet it remains woefully under-implemented [10].

This is largely due to melanin-rich skin, which requires significantly more sun exposure to synthesise Vitamin D compared to lighter skin tones, combined with the reality of living in less sunny, higher-latitude countries like the UK. But there is one group who face an even greater risk, and who are rarely spoken about directly in medical settings: Muslim women who cover.

For women who wear the hijab, niqab, or full-covering modest dress, the skin surface available for sunlight exposure is dramatically reduced. Research confirms that veiled Muslim women have significantly lower Vitamin D levels than their non-veiled counterparts — even in countries with abundant sunshine [11]. A study specifically examining South Asian Muslim women in the UK found average Vitamin D levels as low as 6.9 ng/mL in this group — a level so deficient it can affect bone health, immune function, and hormonal regulation [12].

Covering is a deeply meaningful and personal choice, and it should never place women at a health disadvantage. Given the higher risk of Vitamin D deficiency associated with reduced sun exposure, routine Vitamin D screening and supplementation should be considered standard care for Muslim women — not an afterthought.

This is backed by NHS guidance, which explicitly recommends that adults who usually wear clothes that cover most of their skin outdoors should take a daily supplement of 10 micrograms (400 IU) of Vitamin D throughout the year — not just in winter [9]. The same year-round guidance applies to anyone with darker skin, including those of South Asian and Afro-Caribbean backgrounds [9]. Importantly, this recommendation applies regardless of age. The idea that supplementation is only relevant over the age of 30 is a common misconception; the NHS advises year-round supplementation for anyone in an at-risk group, from adulthood onwards.

There are also halal-certified Vitamin D supplements widely available, which is an important practical consideration for Muslim patients who may have concerns about gelatine-based capsules [11].

This severe deficiency acts like fuel on the fire for both autoimmune dysfunction and insulin resistance. If you have never had your Vitamin D levels checked, please ask your GP today. It is a simple blood test — and a simple supplement — that could be a genuine game-changer for your health.

The research gap: a double invisibility

“One in eight women has PMOS. In South Asia, the numbers are even higher. And yet South Asian and Afro-Caribbean women are among the least represented in the research meant to help them. This needs to change — and it starts with awareness.”

Here is something that does not get said loudly enough: the medical research that informs how we diagnose and treat these conditions has a serious representation problem — and women of colour sit at the heart of it.

Women as a whole have historically been underrepresented in clinical trials. Only around 41% of clinical trial participants are women, and women account for just one third of participants in cardiovascular studies [13]. This matters because drugs, dosages, and diagnostic thresholds are often calibrated on male bodies and then applied universally — with real consequences for women’s health outcomes.

But within that already underrepresented group, South Asian and Afro-Caribbean women are even further marginalised. Research consistently shows that Asian and South Asian populations are significantly underrepresented in medical studies [14], and barriers to recruitment — including language, cultural mistrust, and lack of culturally appropriate outreach — compound this invisibility [15].

The result? The very conditions that disproportionately affect these communities are being studied primarily in populations that do not look like them. The diagnostic criteria, the treatment guidelines, the “normal” reference ranges — many of these were not developed with our biology in mind.

This is not just an academic concern. It is a matter of life and health. We cannot close the health gap without closing the research gap first.

The mind, body, and soul connection

We cannot discuss the health of South Asian and Afro-Caribbean women without acknowledging the cultural and emotional landscape we navigate. Many of us grew up in environments where women’s pain was expected to be endured quietly. Where our needs came last. Where asking for help was seen as weakness.

This cultural silence is not just an emotional burden — it is a physical one. Chronic psychosocial stress leads to prolonged elevation of cortisol, our primary stress hormone. Over time, this chronic stress can alter how our genes express themselves — a process called epigenetics — leading to a dysregulated immune system and increased systemic inflammation [16].

Your grief, your stress, and your exhaustion are intimately connected to your physical health. Caring for your soul is not soft medicine. It is good medicine. And the science backs that up.

When physical illness is called mental illness

There is a dark side to the mind-body connection in clinical practice: the systemic misdiagnosis of physical illness as mental health issues.

Research consistently shows that women’s physical pain is frequently dismissed or minimised in clinical settings [19]. But for women of colour, this dismissal takes a specific form. South Asian and Afro-Caribbean women are significantly more likely to have genuine physical symptoms — such as the profound fatigue of an autoimmune flare, the joint pain of perimenopause, or the brain fog of a thyroid disorder — misattributed to anxiety, depression, or “cultural stress” [20].

This happens because of unconscious bias, a lack of cultural competence, and the simple fact that our bodies often present with symptoms differently than the textbooks describe. If you know your symptoms are physical, do not let anyone tell you it is “just in your head.”

What can we do about it?

Understanding the science is empowering, but action is where healing begins.

Advocate for early and thorough screening. Because conditions like RA, Lupus, and PMOS strike earlier in our communities, do not let anyone tell you that you are “too young” to have joint pain or chronic fatigue. Ask your GP to check autoimmune markers (such as anti-TPO antibodies and ANA), and metabolic indicators (such as fasting insulin, HbA1c, and waist circumference) — not just a standard blood count.

Get your Vitamin D levels checked. Do not guess — test. If you are South Asian, Afro-Caribbean, or a Muslim woman who covers, consider this non-negotiable. If you are deficient, you will likely need a prescribed loading dose followed by a year-round maintenance supplement. Ask specifically about halal-certified formulations if needed.

Embrace culturally tailored nutrition. You do not need to abandon your cultural foods to manage insulin resistance or inflammation. Focus on complex, low-glycaemic index grains, increase your protein and fibre, and balance those beautiful, spice-rich dishes with plenty of vegetables. Traditional South Asian spices — turmeric, fenugreek, cinnamon — have genuine anti-inflammatory and insulin-sensitising properties that modern research is only beginning to validate.

Demand the right language and the right diagnosis. If you have been told you have PCOS and dismissed because your ultrasound was “normal,” go back. The condition is now understood as a systemic hormonal and metabolic disorder — PMOS — and deserves a comprehensive metabolic workup, not just an ovarian scan.

Speak up, and speak loudly. Your body is not failing you. It is communicating. If a doctor dismisses your symptoms, seek a second opinion. Dismissal is not a diagnosis.

The screening gap: when prevention itself is out of reach

As a GP, there is something I witness that troubles me deeply and that rarely makes it into research headlines: South Asian and Afro-Caribbean women are significantly less likely to attend life-saving health screenings — including cervical smear tests, breast cancer screening, and bowel cancer checks.

This is not a matter of not caring about health. It is a matter of barriers so deeply embedded in culture, language, system design, and lived experience that for many women, attending a smear test is genuinely not straightforward.

A mixed-methods systematic review published in BMC Health Services Research identified 34 distinct barriers to breast and cervical cancer screening uptake among Black, Asian, and Minority Ethnic women in the UK [17]. These fell into five major themes: socio-demographic factors, health service delivery failures, cultural and religious barriers, gaps in knowledge and awareness, and emotional and family pressures.

For South Asian women specifically, research has identified a profound lack of autonomy in health decision-making — many women report that attending a smear test requires the permission or approval of a husband or family elder, and that the intimate nature of the examination conflicts with deeply held values around modesty and privacy [18]. For Afro-Caribbean women, cancer stigma, fear of a bad diagnosis, and historical mistrust of the medical system — rooted in generations of being dismissed, mistreated, or ignored — are significant drivers of non-attendance [17].

And yet the consequences of not attending are stark. Cervical cancer is almost entirely preventable with regular screening. Breast cancer caught early is overwhelmingly treatable. The gap in screening uptake is not a personal failing — it is a systemic failure to make these services genuinely accessible, culturally safe, and trustworthy for all women.

“Cervical cancer is almost entirely preventable. But prevention only works if the system makes it possible for every woman to say yes.”

What you can do right now

Check when your last smear was. In the UK, women aged 25–49 are invited every three years, and those aged 50–64 every five years. If you have missed an invitation, you can self-refer by contacting your GP surgery directly — you do not need to wait to be called.

Request a female clinician. You are entitled to ask for a female doctor or nurse to perform your smear test. This is not an unusual request — it is a standard option and your GP surgery should accommodate it without question.

Ask about self-sampling. HPV self-sampling kits — where you take your own sample at home — are increasingly available in the UK for women who have not attended screening. Ask your GP or check your local NHS trust’s website. This option removes many of the modesty and access barriers in one step.

Bring a trusted woman with you. You are allowed to bring a chaperone — a friend, sister, or community worker — to any clinical appointment. Having someone you trust in the room can make an enormous difference.

Talk about it. The single most powerful thing you can do is break the silence in your own community. Tell your mother, your sister, your friend. Normalise the conversation. Screening saves lives — but only when we show up.

If you do one thing: start with self-care — even if nobody taught you how

I want to speak directly to something that does not appear in any clinical guideline, but that I see every single day in my consulting room.

In many South Asian and Afro-Caribbean households, self-care is not a concept that is passed down. It is not modelled. It is often not even spoken about. The women in our communities are raised to give — to their families, their children, their parents, their communities — and to keep giving, quietly and without complaint. To rest is to be lazy. To say “I am not coping” is to bring shame. To put yourself first is, in many cultural frameworks, almost unthinkable.

But here is what I need you to hear: you cannot pour from an empty vessel. And the chronic, relentless depletion that so many women in our communities experience is not a virtue — it is a health risk. The science is unambiguous: chronic stress, poor sleep, social isolation, and the suppression of emotional needs all drive inflammation, dysregulate hormones, and accelerate the very conditions we have been discussing in this post.

Self-care is not a luxury. It is not selfish. It is not a Western concept that does not apply to you. It is medicine. And it starts with one small habit.

Five small habits to start today

You do not need a spa day, a wellness retreat, or an hour of free time you do not have. Start here:

Take your Vitamin D every morning. Place the bottle next to your toothbrush so you cannot forget. This single act — costing pennies a day — can meaningfully support your immune system, your mood, and your hormonal health. It is the lowest-effort, highest-impact habit change in this entire post.
Eat breakfast before you feed everyone else. In so many of our households, women serve breakfast and then eat whatever is left, standing up, over the sink. Sit down. Eat first. A protein-rich breakfast — eggs, Greek yoghurt, lentils, nuts — stabilises your blood sugar for the entire day and reduces the cortisol spike that comes from skipping meals. This is not indulgence; it is metabolic medicine.
Walk for ten minutes after dinner. Not a gym session. Not a fitness programme. Just ten minutes outside, ideally in daylight. This simple habit improves insulin sensitivity, lowers blood sugar, reduces cortisol, and — perhaps most importantly — gives you ten minutes that belong entirely to you. Research consistently shows that even short bouts of walking after meals have a meaningful impact on metabolic health.
Name one feeling a day. This sounds almost too simple. But for women who have spent decades not being asked how they feel — and not asking themselves — the act of pausing once a day and naming an emotion is genuinely therapeutic. Write it in a notes app, say it out loud in the car, whisper it to yourself in the bathroom. Emotional awareness is the first step towards emotional regulation, and emotional regulation directly reduces the chronic stress that drives inflammation.
Say no to one thing this week. Just one. It does not have to be a big thing. It might be a family obligation, a social commitment, or an extra task at work. The practice of saying no — of recognising that your time and energy are finite and valuable — is one of the most radical acts of self-care available to women in our communities. And like any muscle, it gets easier the more you use it.

You do not have to change everything at once. You do not have to be perfect. You just have to start. Pick one of the above. Do it tomorrow. That is enough.

I became a doctor because I watched the women around me carry enormous physical and emotional burdens without ever being asked how they truly were. I want to ask you today: How are you, truly?

“You cannot pour from an empty vessel. Looking after yourself is not selfish — it is the most important thing you can do for everyone you love.”

The science is finally catching up with what so many of us have known in our bodies for years. Now it is time for medicine to catch up too.

If this resonated with you, share it with a woman in your life who needs to hear it. Let’s break the silence — together.

Your “When to see your GP” checklist

If you are experiencing any of the following, please book an appointment with your GP. You can even screenshot this list and take it with you:

Persistent, crushing fatigue that does not improve with rest
Unexplained joint or muscle pain, especially if you are over 40
Irregular, heavy, or intensely painful periods that disrupt your life
Unexplained weight gain or difficulty losing weight despite lifestyle changes
Hair loss or thinning, particularly around the crown or eyebrows
Brain fog, poor memory, or sudden mood changes
You have missed a cervical smear or breast screening appointment

With warmth and wellness, Dr Rabia — The Soulful GP

Disclaimer: This post is for educational and informational purposes only and does not constitute individual medical advice. Please always consult with your own GP or a qualified healthcare professional regarding your personal health concerns.

Follow me on Instagram @thesoulfulgp for more evidence-based women’s health content.