What it’s like to live with lupus

Sarah Heney had been back and forth to her GP time and time again – she had headaches, was feeling run down and now had joint pain in her ankles.

‘I thought it was just part of being middle-aged,’ she explains.

But after over a year of things being dismissed as ‘nothing to worry about’, another trip to see the doctor about the pain in her ankles led to a lifechanging moment.

Looking back through her notes, the GP was worried that all these minor things could be connected.

He referred her to a rheumatologist and, after a year-long series of tests and examinations, Sarah was diagnosed with lupus.

The condition affects around 50,000 people in the UK but most people have never heard of it.

The test does not mean she has been diagnosed with the condition, but it is an indicator that something could be wrong. She is still awaiting the results of further examinations.

For many people, the first signs are the same as many other conditions but common things include achy and swollen joints, fatigue, an unexplained fever and a rash called a butterfly rash that appears across the face.

Kim Kardashian had tests because she was complaining of pain in her hands.

For Sarah, the road to diagnosis was a long one but it was also joint pain that made her doctor realise something was seriously wrong.

Now 55, she first started experiencing symptoms in her mid-forties.

She tells Metro.co.uk: ‘I was going to the doctor all the time and I seemed like a hypochondriac, but I’m really not.

‘It was just for things like headaches, chest infections and then joint pain. They’d all been dismissed as just minor things but one GP had a lightbulb moment and ran some blood tests.

‘I was lucky because it can take much longer than that for someone to realise and lots of GPs don’t know much about lupus.’

After she was referred, Sarah spent another year and a half going to hospital appointments and during that time, her symptoms got much worse.

Sarah, from Edinburgh, Scotland, adds: ‘My hair was falling out by the handful, I was having lots of rashes, I had a dry cough, joint pain everywhere and severe nausea, among a whole host of other symptoms.

‘I developed a reaction to certain types of light so any time I went anywhere with fluorescent lighting or low energy bulbs, I would feel really ill.

‘I had a fever a lot of the time and the fatigue was off the scale – I would fall asleep wherever I sat down.’

After a year of tests, in 2010, Sarah was told the news she had lupus and immediately started on medication, including hydroxychloroquine, a drug originally developed to treat malaria.

Sarah explains: ‘I had a steroid injection and that helped straight away and the drugs helped a lot but they heavily suppress your immune system, which means I often get serious infections – I have had kidney infections, pneumonia and sepsis.

‘I was also given steroids, which help but have awful side effects like weight gain.

‘The medication really helped but sometimes the side effects are almost just as bad as the condition.’

Sarah’s condition is managed with medication but she still has flares and she had to give up her job as a marketing manager in 2012 because of the impact of her condition.

She explains: ‘They were so great and tried to hard to help me but it as just too difficult. I had a whole grief process with that because my job was a huge part of my identity.

‘Now it still impacts me every day but some days are worse than others. Some days I just can’t get out of bed and I just accept that.

‘I’m careful to pace myself to do the things that are important to me but it is hard for people to understand that one day I am fine to go out and the next day I can’t do the thing we had planned.’

Most people living with the condition are female – 90% are women and just 10% of lupus patients are men.

Chris Clarke, who was diagnosed in 2012 at the age of 18, says that although he has received a huge amount of support, it can be isolating being a man with the condition.

Now 25, he was diagnosed by chance when he developed a rash after playing rugby.

He was training to join the military and trying to improve his fitness when the typical ‘butterfly rash’ across the nose and cheeks appeared.

Chris, from Glenrothes, Scotland, went to his doctor, who prescribed antibiotics but after they finished the rash remained and he was feeling more unwell.

He was referred to a dermatologist who took a skin biopsy and carried out other tests until in June 2012, he was told he had lupus and started treatment.

He says: ‘I had never heard of it and I was taken back a bit because all my plans had to change.

‘I wasn’t able to join the military and I had to cancel a three-month-long trip to America.’

Although upset, Chris focused on getting his condition under control and his severe symptoms calmed down.

He was monitored by doctors to see how the lupus was affecting him but in 2015, he got a phone call just as he was heading off on a family holiday to say his kidney function had declined to 35% and he needed an urgent hospital appointment.

Lupus affects each person differently and in some cases, like Chris’, it can attack the kidney.

Chris was given medication to try to stop the kidney damage but unfortunately, it continued and last year, he had to start dialysis when his function declined to 4%. A dialysis machine works by processing the waste and excess fluid from the body – something the kidney usually does.

Although he was able to do it himself at home, Chris had to give up work and move back in with his parents.

In April this year, he was placed on the transplant waiting list and just four weeks agoing on August 15, just before 3 am, he got a call to say they had a suitable kidney for him.

He explains: ‘It was such a surreal moment. I was trying to wake up my parents and explain to them we needed to go to Edinburgh right now, while I was still on the phone to the hospital.

‘I had the transplant later that morning and it all went really well. It is very tragic that someone had to pass away for me to get this but I am so glad to have been given this chance.’

Chris doesn’t know how his lupus will continue to impact him but is focusing on recovering and raising awareness for the condition.

He says: ‘I have always been a positive person so I just try not to let it affect me too much.

‘It can be hard being a younger man when I go to support groups and they are all older women but I am an open person so I realised I could just chat with anyone.

‘I am on the Lupus UK contact list and I am one of the only men on there. When newly diagnosed people get in touch, I try to help them by telling them about my experience and have even met up with some.’

Emma Rae has also been helped by the support network of online and real-life groups set up for people living with lupus.

Emma was just 17 when she was diagnosed. Previously a keen hammer thrower, she had noticed that she wasn’t moving quite as well for about a year before diagnosis, but it wasn’t until Christmas 2017 that she realised something was really wrong.

She explains: ‘I had what just felt like really bad flu but it didn’t go away. I felt so unwell I barely remember anything from that time.

‘I had really bad swelling and pain in my joints but I was told it was just a virus.

‘I just kept going back to the doctor until eventually they did the lupus blood test and it showed that I had the antibody. A kidney biopsy also showed that there was damage to my kidneys.

‘I had never heard of lupus so had no idea what it was but I felt so poorly, being told that they had found something was actually a huge relief.’

Emma started treatment and says that the very next day, she felt much better.

Emma’s condition improved and although she got tired very quickly and suffered some pain in the evenings, she felt life was getting back to normal.

Last year, she decided to move to Aberdeen for university, but a few months in, she found living in halls, looking after herself and the stress of studying caused a flare.

Now, she is much better and is working as a nursery nurse while living with her parents and applying for Geography courses closer to home.