A hot day is hell if you’re living with lupus, I'd love a cold rainy summer

Artist, doctor and health advocate Dr Liz Murray, 34, lives in Norfolk with her husband, Philip, 26, a consultant radiologist, and their daughter, aged nine, and son, aged five. Here she shares what it’s like to live with lupus and how sunny days can be the hardest…

On a family day out to the seaside last year it really hit me how much lupus starves me of the fun I long to have. People take simple things like days on the beach for granted, but for me, it’s not the kind of day I can enjoy.

As we’d arrived on the beach, the tide was out and my two children charged down to the water’s edge, shouting with excitement. I tried to walk with them, but using a walking stick on a beach just isn’t practical and with the pain in my joints, I soon became exhausted.

Walking back to sit on my towel, I watched them play in the water with their dad and had a little cry. It was soul-crushing and I’d have given anything to spend an hour in the water with them, like I could have done before they were born, but since my lupus has progressed, it’s just not possible. Every summer day out is dictated by my limitations.

Living with lupus

Lupus is an autoimmune disease that affects people in different ways. The condition has a huge spectrum of symptoms from mild to severe, and in some cases it can cause damage to the heart, lungs, brain and kidneys. It can even be life-threatening.

In my case, it attacks my muscles, joints, eyes and mouth and I’d be considered a moderate case, but heading towards more severe. I’m lucky that my organs haven’t suffered, although I do have bowel and bladder issues due to surgery and have to self-catheterise.

The condition has caused a lot of problems with my hips and ankles so I walk with a stick, and my mobility issues are hugely frustrating.

My lupus overlaps with other conditions like endometriosis and Raynaud's disease, which restricts the flow of blood in my hands, and Sjögren's syndrome, which causes gritty, dry eyes. My lupus has been attacking my right eye for many years, giving me blurred and dark vision.

I’m very photo-sensitive, and in hot weather lupus causes a prickly heat type rash, headaches and fatigue. I dread hot days and can’t go to the beach or for a day out. If it’s above 30 degrees, I can’t be in the sun for more than a few minutes due to the rash, and have to wear massive hats and a shawl to cover my shoulders.

If we go on holiday during the summer it’s very difficult – a beach or pool type holiday is out of the question. At times, I’ve had to hire a mobility scooter to get around on holiday. We haven’t booked anything this year, but something like Center Parcs would probably be more doable, and visiting cooler countries, avoiding the months of July and August.

Winter hurts if you have lupus, but summer is tiring – so I’m enjoying the bad weather this summer, as it’s not too hot or cold and I’m suffering much less than in hot weather.

Lupus flares

Lupus comes in flares and each episode is different. Although it wasn’t diagnosed at the time, my symptoms started when I was 19 when the physical exertion of starting university led to such bad hip pain that I needed surgery and was in a wheelchair for a year.

At the time, my consultants didn’t realise the muscle deterioration in my hips was due to lupus. In fact, I was only diagnosed five years ago with both lupus and stage four endometriosis, needing multiple surgeries including bilateral muscle release and repositioning, and multiple laparoscopies. I’ve also since had a hysterectomy.

It was only after one of my many miscarriages that the consultant noticed my ankles were swollen and suggested my symptoms may indicate lupus. When I tracked back and thought of my other symptoms, like my skin’s reaction to the sun, I realised it all fitted. It was a relief to finally get a diagnosis.

At the time I’d decided to give up my job as an urgent care doctor, but during the Covid pandemic I changed my mind and returned to emergency medicine, where I was needed.

However, it soon became obvious that I needed more surgeries so it wasn’t going to be feasible for me to continue working – if I have a lupus flare, I can be unwell for months and meeting the demands of such a physical job is too much. So, I had to leave medicine for good last year.

After having my daughter, who is nine, I had six miscarriages caused by a combination of the lupus and endometriosis. It was only when I got established on lupus medication, hydroxychloroquine, an immune-modulating drug, that I was able to have a second successful pregnancy that went to term – my son, now five.

Constant pain

Living with lupus is relentless. There isn’t a day when I’m not in pain in my back and hips. You can have a day when you put make-up on and dress up and look normal, but in fact everything is an effort.

Some days it can take four hours to wash and dry my hair and get dressed, because I can’t stand to shower, then have to rest before the effort of drying my hair. At times, the pain is so bad I can’t walk up the stairs and have to go on my hands and knees.

It would be so easy to just stay in bed and wallow in it, but the reality is it’s not going to get better. You can give into it and mope or crack on and push through.

My husband Philip is a great help, and has to take on a lot of work around the house, doing the school run and the cooking, although he is away a lot with work. The children go to him for play, and come to me for a snuggle on the sofa – it’s with their dad that they’ll bounce around on the trampoline.

Lupus is an invisible disability. You can look well but, for some people, every day you’re in pain and struggling. Or you can be well one day but bed-bound the next. People can be very dismissive about how hard it is to live with.

Helping others understand

Nowadays some of my close friends are getting better at understanding, but people who haven’t got a chronic illness don’t fully get it. I don’t want to be mollycoddled – I’m fiercely strong in spirit and passionate about my work as an artist, health advocate and charity founder, so to be limited so much physically is difficult for me.

Some days I’m in so much pain I can’t pick up my children. I want to go for a walk with them but can’t walk far, much less run. I wanted to take my daughter to a concert, but I knew I wouldn’t be able to stand through it.

She’s getting a lot better at understanding, and they’ve both got used to the fact that I sometimes need a walking stick. But my son is autistic so explaining to him why I can’t always pick him up is hard. In fact, I sometimes make myself uncomfortable rather than refusing to hug him or carry him.

Hair loss

Extreme weather can cause a flare, as can big life events. During Covid I had a flare that was so severe it caused my hair and eyelashes to fall out. I couldn’t walk, was breathless, had palpitations and was in so much pain that I was bound to the sofa for months. By this point I was taking hydroxychloroquine – it's very strong and it was a combination of the drug and Covid that led to my hair loss.

I’d be in the shower and my hair would be coming out in fistfuls, which was incredibly upsetting. With my steroid-bloated face and thin patchy hair, I hated the way I looked. I’d wear headscarves to hide it, and even tried adding extensions, but these just pulled out the rest of my hair.

Still now, my eyelashes haven’t grown back so I have to wear fake ones. Many people with lupus have skin problems, like rashes or sores on the scalp, that can cause hair loss and, like with me, it can also be the side effects of certain medicines used to treat lupus.

Finding the right treatment

My consultant wants to put me on stronger medication. I’ve been on so many different types, but they all have various problems and side effects. Some of the drugs available are akin to chemotherapy drugs. So I’m having a battle to get the right treatment. At one point my consultant wanted to put me on a drug that risks inducing MS.

I also take steroids for flares and pain relief which barely touch it. You get in this cycle of starting and stopping steroids, which causes weight fluctuations, and that’s not fun – in fact, at one point I gained four stone, which was really difficult emotionally for someone who’s normally a size eight. I’ve tried autoimmune diet changes like cutting down on dairy, gluten and sugar, which can help with symptoms, but only in a minor way.

Understanding what triggers my flares can be helpful. Looking back, the stress of preparing for my wedding in 2012 caused a flare, and a rash all over my neck just a week before my wedding meant I had to be put on steroids. Fortunately, they did improve the rash by my wedding day, and the rest had to be covered with make-up.

Lupus is a condition that’s more likely to affect women and there is discrimination towards people with lupus on the assumption that they are just lazy and it’s just a psychological thing. In my opinion, the medical profession tends to gaslight women over autoimmune conditions. Some male doctors assume women have mental health conditions, that they’re depressed and therefore the pain they describe is disproportionate.

The fact is, there are women who can get very depressed by it, and they’re not in pain because they’re depressed, but depressed because they’re exhausted by being relentlessly ill. It’s not self-induced, but something they’re going to have to live with for life, that’s not going to get better after a good night’s sleep. Women are expected to tolerate a lot more than men before they’re taken seriously.

Using art to address the stigma

When I finally left the medical profession, I started a podcast and charity art campaign, Mortal and Strong, putting gold leaf on the scars of women then getting them photographed to capture their beauty and strength. It’s a way to combine medicine and art, and to address social stigma over women’s chronic disease, from breast cancer to multiple sclerosis. I wanted to showcase these women living well with disease, in spite of life-limiting symptoms.

Lupus is one of those invisible and fluctuating disabilities that people don’t fully appreciate but just because you can’t see it, it doesn’t mean you don’t need to try to understand what a sufferer is going through. It’s a physical weakness but not an emotional one.

I don’t want to be a victim and I realise that life is precious so I want to make the most of it. My diagnosis doesn’t define me, and it’s not about what I can’t do but what I can do on the days when I feel well.

See Liz’s work and charity art campaign Mortal and Strong at Lizmurrayart.com. For support and information go to Lupusuk.org.uk.

Read more

Inside Louise Thompson's health battle: From lupus diagnosis to life-saving stoma bag (Evening Standard, 6-min read)