LIVING WITH LUPUS

Life with the autoimmune disease that disproportionately affects Black women

Alicia Slocombe was midway through a presentation to her 14-strong team when she paused in the middle of a sentence. ‘I couldn’t remember the word for something, so I had to stop. It was as though the word just evaporated from my brain, so I just stood there trying to remember it, while everyone stared at me,’ the 38-year-old team manager from Bristol explains. She wrote it off as a bad day, but in the months that followed, the brain fog – as she came to know it – became the least of her concerns. ‘I’d wake up exhausted; not just tired, but physically exhausted. I had pain in my limbs, and I’d get these awful, pounding headaches.’ She’d already been diagnosed with Reynaud’s (a condition affecting blood circulation) and carpal tunnel syndrome (a nerve condition that causes tingling in the hands and wrists), but neither diagnosis could account for her recent symptoms. By last July, she could no longer function. ‘I’d never known tiredness like it. I work full time and

I have two children, so you expect to feel tired. Even my husband would say, “You’re probably just working too hard.” On the outside, I looked fine, but I felt horrendous. I knew I was ill, but you second guess yourself. I’d think: “Am I making it up?”’

She wasn’t, of course. After multiple blood tests and a referral to a rheumatologist (a specialist in musculoskeletal diseases), Alicia was diagnosed with lupus – an autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. While the disease is relatively rare – an estimated one in every 1,000 people in the UK is thought to have lupus – Alicia’s gender, age and ethnicity (Afro-caribbean) make her a typical patient; 90% of lupus sufferers are women, most are aged between 15 and 45, and Black and Asian women are both more likely to be diagnosed and experience more severe symptoms. That her diagnosis took three years is also not uncommon; a study of 5,500-plus Lupus UK members, published in 2018, revealed that the mean time between developing a lupus symptom and diagnosis was 6.4 years, with half of respondents receiving a different diagnosis prior to their final one. It’s a long time to live in pain, and it’s a long time to second guess yourself. So what causes lupus? And how can you discern the symptoms of an autoimmune disease from the symptoms of, well, life?

INVISIBLE SYMPTOMS

An explanation for lupus begins with a word you’ve probably been hearing a lot lately: antibodies. ‘We know that antibodies – which are involved in the immune response – are a big driver of the disease in that they attack organs all over the body, triggering inflammation,’ says Dr Chris Wincup, clinical research fellow and honorary rheumatology registrar at UCL. This explains why lupus is associated with such a vast range of symptoms, from skin rashes and joint pain to headaches, fatigue and brain fog. Dr Wincup is currently researching the latter. ‘If the lupus is affecting the skin, it’s easy to see that there’s a problem there; similarly with the joints. But when we have these much more non-specific symptoms

(80% to 90% of lupus patients report fatigue to be their main symptom), it’s more difficult to treat.’

As to what causes lupus, it’s another question mark. One explanation for why lupus disproportionately affects women is that it’s triggered by changes in oestrogen and progesterone levels; women are commonly diagnosed during puberty, after having a baby or during the menopause. ‘But the relationship between hormones and the immune system isn’t well understood, so this is just a theory,’ adds Dr Wincup. Similarly, it’s not known why Black and Asian women are more likely to be diagnosed, only that genetic and environmental factors – sunlight can cause flare-ups and Dr Wincup points to evidence linking autoimmune diseases with the microbiome – are likely involved. But the fact that Black women are also more at risk of developing severe lupus points to systemic issues, such as access to healthcare and the quality of the patient-doctor relationship.

SPEAKING UP

It’s the non-specific nature of symptoms that makes lupus so difficult to recognise – and the reason why Alicia second-guessed her own pain. But while she acknowledges the inherent difficulty in diagnosing a little-discussed illness – with symptoms that can be conflated with the by-products of a stressful life – she suspects it’s not the only reason why a disease that disproportionately affects Black and Asian women takes so long to diagnose. ‘I really had to push to be taken seriously,’ she recalls, of her multiple visits to the doctor. ‘I was lucky – I had private healthcare through my work, and it still took me being diagnosed with two other conditions before I found out the underlying problem. Your symptoms might be real but, when you’re talking about things like fatigue and headaches, you really have to make yourself heard.’ That women, particularly Black, Asian and other minority ethnic women, are less likely to be believed by medical professionals than men is an issue WH has reported on before. Research has shown that your gender and ethnicity inform your likelihood of being given pain medication, as well as the treatment recommendations you receive.

It’s a familiar story for 41-year-old Monique Gore-massy. She suffered for two years with worsening symptoms, including joint pain, extreme weight loss, disorientation and ferocious fevers, and was ‘knocking on death’s door’ by the time she was diagnosed. Like Alicia, she acknowledges that lupus is a difficult condition to diagnose, since so many of the symptoms are invisible – she was misdiagnosed with chest infections, eczema and anaemia – but what left her so frustrated was the feeling that her symptoms weren’t being taken seriously by those treating her, even when they were visible. ‘Every time I went to A&E, they’d see the rash or swelling, and I’d have to ask, “Could you tell me more about that?” It took the development of another visible symptom – her hair falling out – for her to finally be diagnosed. But even then, it was a result of her own intervention. After she started keeping a log of her symptoms and presented it to her doctor, she was referred to an autoimmune specialist, who told her right away it had to be rheumatoid arthritis or lupus. ‘I felt like the healthcare system failed me. I was very persistent. I knocked on every door. I charted my symptoms,’ she says, adding that she never expected it to be so hard to get doctors to listen to her.

Alicia, too, has become well-practised at advocating for herself. She now sees a rheumatologist every three months and she’s preparing to start a course of steroids. Since there’s no known cure for lupus, symptom management is the best course of action. But Dr Wincup adds that lifestyle tweaks – eating a Mediterranean diet, doing gentle exercise like yoga and limiting your alcohol intake – can help, too. For Alicia, the biggest relief has come from the camaraderie she’s found in other women living with hidden health conditions. Her advice to any women living with chronic, unexplained symptoms? ‘Don’t give up: it’s not in your head. Keep a symptom journal, noting down when and how frequently they occur – that way, you’ll have something to take along to your next appointment.

You know your body better than anyone, and you know what’s normal for you.’

To find out more about lupus, visit lupusuk.org.uk

‘I’d wake up exhausted; not just tired, but physically exhausted’