For more than 30 years experts dismissed my angry red hives as rosacea. In fact, I have an autoimmune condition that affects thousands of menopausal women but is often misdiagnosed. These are the other symptoms to look out for

I won't be the only one praying for rain this August after a series of punishing heatwaves, but my relief is not for the reason you might think.

I’ll be cheering because it means there’s no risk of me breaking out in the angry red hives that have appeared on my face in the sun for nearly 50 years.

For decades, I dismissed the condition as rosacea, but after multiple visits to my GP, blood tests and dermatologist appointments, I finally got a diagnosis – I have the autoimmune disease lupus.

I was on holiday in Paris in August 2023 when my doctor called with the results of a routine blood test, saying I needed an urgent rheumatology referral as I appeared to have high levels of inflammation in my body.

I was slim, fit and healthy. It made no sense.

The more I read online, the more I began to worry. Lupus kept coming up in my searches and I found myself slipping down a rabbit hole of worst-case scenarios.

‘Inflammation from lupus can cause severe damage to the heart, lungs, brain or kidneys, which can be life-threatening,’ read the NHS website.

I tried to put the issue to the back of my mind until we got home, but then I fell ill on our next stop in Milan.

In the 40C heat, my face came out in angry red lumps and I was hit by a throbbing three-day migraine.

That’s when my panic Googling stopped feeling like an overreaction and so many ailments I had overlooked for years began to make sense.

Lupus is an incurable, lifelong condition that causes your immune system to attack your own skin, creating a distinctive red rash. Crucially, the rash is triggered by sunlight and is a sign your body is having a ‘lupus flare-up’ - essentially making me allergic to the sun.

After nearly a dozen visits to the hospital and GP, over a year later – in September 2024 – I was finally told I had cutaneous lupus, a form of lupus that mainly affects the skin.

I was grateful I didn’t have the more severe form known as systemic lupus, which is linked to joint pain, exhaustion and - thank you, Google - damage to the lungs, heart, kidneys and brain.

My diagnosis was the missing piece in a puzzle I’d spent my life trying to figure out after years of discomfort and social embarrassment.

Lupus is known as the ‘disease of a thousand faces’ as it has such varied symptoms (which explains why it often takes so long to get a diagnosis, as the symptoms overlap with so many other conditions). I have always had regular mouth ulcers, and I’m also allergic to bee stings, mosquito bites and nits.

Around 50,000 people in the UK are estimated to have the disease, and about 90 per cent of those are women, typically aged between 15 and 55. Interestingly, it can develop during menopause due to changes in hormonal activity, but mine first presented in childhood.

When I was four, my mum took me on a five-week tour of Australia. My usually perfect skin broke out in nasty red hives that lasted the entire trip. My mother kept anxiously slathering me in Factor 50, then back in the UK I was prescribed a steroid cream for my face by the GP. We were told to only use it sparingly for a short time, as it can thin the skin. Eventually, back in the cooler weather, the rash disappeared.

Later, while most teenagers battle with acne, I found myself still struggling with a crop of raised, itchy lumps on my cheeks and often on my nose, hairline and upper back whenever I went out in the sun. It would then take six weeks for them to disappear. As I got older, I became increasingly self-conscious - most of the time, I was able to hide the lumps with concealer, but I remember being on a beach when I was 16 with one of my few friends who had seen me without make-up, and she told me my skin was my worst feature. I knew it was true, but it was hard to hear.

Mum booked me a Clinique consultation, buying a batch of expensive products, but still the lumps kept coming. Soon after, we saw another GP, who referred me to a dermatologist. She misdiagnosed me with the skin condition rosacea and I spent the next 30 years thinking that was the cause. I’m annoyed with myself for not getting the rash checked out again much sooner, thinking of all those summers I wasted with itchy red lumps.

I treat them with two topical steroid creams, which don’t prevent the rashes, but treat them once they’ve reared their ugly head. My consultant warned me the best prevention is to stay out of the sun for life.

I was heartbroken at first, as I love outdoor swimming, but I still swim in the evenings and wear shades and a cap to cover my face.

During the recent heatwaves, even the 20-minute school run with my three daughters has been a struggle. I’ve resorted to carrying a sun parasol, which has attracted a few stares. My nine-year-old told me she ‘hates the embarrassing umbrella’ and was mortified when I had to bring it to school sports day. I wear Factor 50 all-year round and a special Factor 100 lotion called Eucerin Sun Actinic Control, designed for people at high risk of sun damage, when the UV is very high.

There’s no cure for lupus, but there are several different drug treatments available to control the symptoms of systemic lupus, which I have up to a 20 per cent chance of developing. The more I expose myself to the sun, the higher my risk.

For now though, I won’t let it hold me back from travelling the world, I just go away during cooler times of year - in February I went to Thailand and I’m off to Greece for October half-term. In a way it’s liberating that holidays are no longer about working on my tan. Instead, that’s exactly what I want to avoid. 

* lupusuk.org.uk/