My doctor said I had anxiety – but my pain and fatigue was down to something else

At 17 years old, Beth Smith suddenly started coming out in a rash that spread across her entire body. It was alarming – she had no idea what it was. “My symptoms came out of nowhere. My body was covered from head to toe in this rash that looked like hives, like I was allergic to something,” says Smith, now 31. She was also experiencing fatigue, joint pain, inflammation and a redness across her face that was like “a butterfly across the bridge of my nose and my cheeks”, she says. “I would wake up in the morning, be fine for the first hour, then be covered head to toe in this splotchy rash. The joint pain would follow, and the inflammation in my wrists and fingers,” says Smith. “That was when I went to my GP for the first time, because it was starting to get a bit scary.” It was the start of a long process for Smith, which took about two years and eventually led to her getting diagnosed with lupus. “Lupus is a chronic systemic autoimmune condition,” explains Chris Wincup, a consultant rheumatologist specialising in lupus at King’s College Hospital and senior lecturer at King’s College London. “There’s no cure for lupus, and systemic means that it involves multiple parts of the body, including the kidneys, skin, joints, heart and lungs. And it’s autoimmune – in lupus, the immune system becomes confused and starts attacking the body’s otherwise healthy tissue.” Studies show that around 1 in 1,000 people in the UK have lupus, and that 90 per cent of people with the condition are female. People usually develop lupus between the ages of 15 and 55. Ethnicity is a factor, too. “There’s a marked ethnicity disparity with the disease being more common and more severe in patients who have a non-Caucasian background,” says Wincup. In terms of symptoms, Wincup says that “90 per cent of people with lupus say fatigue is their worst symptom” and that “skin disease is a very common manifestation”, adding: “75 per cent of people will have trouble with their skin at some point, and 25 per cent of people have skin changes at the start.” According to Lupus UK, the average time from symptoms first appearing to getting a diagnosis is about six years. After Smith went to the GP for the first time, she had blood tests, which came back normal. Next, the GP prescribed a steroid cream, suggesting the rash might be psoriasis. “It felt like we were treating the visible symptom, but we weren’t investigating the overarching problem,” says Smith. “The joint pain was ignored. It felt more like they were going: ‘She’s bothered about her appearance’. Actually, I was bothered about why I was feeling so unwell.” Smith was then told it might be acne, and prescribed medication for that. Over the course of a year, Smith repeatedly went back to the GP, her joint pain and inflammation becoming unbearable. “At one point, turning on a light switch made me cry,” she says. Smith was gearing up to go to university. Before moving, she went back to the GP one last time. “My GP said to me: ‘Maybe we need to start looking at this from a mental health perspective. Maybe this is all in your head’, which is an absolutely devastating thing to hear,” she says. Smith was excited to go to university, but once there, she struggled because of her illness. “I was in agonising pain. It was making university and my social life very hard,” she says. Desperate for answers, she googled her symptoms, which she had previously avoided doing through fear of getting the wrong information. She found a list of symptoms on the Lupus UK website and things started to click into place. After going back to her GP, Smith was told her symptoms were “all in your head” She went to the doctors at her university with the Lupus UK website loaded up on her phone, and burst into tears. They looked at the list of lupus symptoms together and the GP agreed, referring her to a consultant rheumatologist. “In my first appointment, I was told I was a textbook lupus case,” she says. “They couldn’t believe that [my symptoms] had been missed for so long.” Recent research from the University of Cambridge found that 43 per cent of females with autoimmune conditions have had their symptoms misattributed to a psychiatric cause, compared with 33 per cent of males. The study also found that women with autoimmune conditions are more likely to be told that their symptoms are psychosomatic (34 per cent of females compared with 22 per cent of males). This resonates with Smith. “You start to doubt yourself when you’re told by a medical professional that it might be all in your head,” she says. Wincup confirms that misdiagnosis of lupus is common. “I suspect the factors for this are severalfold: Lupus is a rare disease, so most doctors will go through much of their career without seeing many patients with it. Many of the symptoms are not obviously visible, particularly early in the disease. And we sadly see high levels of poor mental health in this condition, in particular, depression and anxiety, due to the uncertainty as to what is causing the symptoms.” Receiving her diagnosis was a huge breakthrough for Smith, but it was also scary. “I felt relieved because I finally had an answer. But there was also fear for the future because lupus is one of those diseases where there is no one-size-fits-all,” says Smith. Scientists like Wincup are trying to develop better tests for lupus, and to establish why it happens. “Part of the cause of lupus is genetic risk,” says Wincup, but environmental factors then trigger it. These include things like exposure to a virus and ultraviolet radiation or sunlight causing problems with your skin. “We know that 90 per cent of people with the condition are female. The disease is rarely seen before puberty, and symptoms often settle after menopause, so we think there’s probably an oestrogen component to it,” he says. Patients with lupus will usually be prescribed a steroid medicine such as prednisolone to get their symptoms under control, explains Wincup. “They’re effective, but they carry long-term risks if you stay on it for a long time, so we then try other medicines. More commonly, that’s an anti-malarial medicine called hydroxychloroquine, which helps reduce the number of flares and reduces infections.” If symptoms flare up, patients can also be prescribed different types of immunosuppressive medicine. In recent years, there have been developments in treatments for lupus, including trials showing potential benefits of monoclonal antibodies or biologic therapies, and a newer type of therapy called cellular therapies or CAR T-cell therapy, which is used in patients with blood cancer. Wincup is hopeful about these developments. “Hopefully, in the coming years, we’ll be able to find a way of identifying the disease earlier, make the diagnosis quicker and have better therapies available,” he says. With the knowledge Smith has about lupus now, she wonders if her symptoms started much earlier. At the age of 10, she suffered with bowel problems, gastrointestinal issues and joint pain, none of which any health professional could explain. At age 14, she was hospitalised because of her gastrointestinal issues. Her joint pain was dismissed as growing pains, and they would often put her symptoms down to hormones and her period. “I wonder if there were a lot of missed opportunities to diagnose it earlier,” she says. She is now in remission and has been given the all-clear to stop taking her medication, but is being monitored every six months. While grateful to be in remission, Smith still struggles with fatigue and lives with the anxiety of her symptoms coming back. But she is grateful for the resilience she’s developed. “You can knock me down, but I will get back up. It’s given me a sense of empowerment. I hope I can inspire others to keep going.”