I have increasingly common condition mistaken as laziness & was bedbound until ‘last roll of dice’ appt gave me answers

AFTER falling ill with glandular fever in January 2020, Jack Lawrence had no idea it would be the start of a long journey to a medical diagnosis that would change his life forever. The TikTok star, from Watford, is among the increasing number diagnosed with a misunderstood condition which has reportedly surged over the last few years, and is often mistaken as “anxiety or being lazy”. Jack Lawrence (left) was initially struck by a bout of glandular fever in 2020 Credit: Supplied A trip to a bar with friends when lockdown eased in 2021 took Jack to almost breaking point, leaving him desperate for answers Credit: Supplied 27-year-old Jack’s health woes began with glandular fever, but it took over three years before doctors eventually diagnosed him with postural orthostatic tachycardia syndrome, also known as PoTS. It’s a condition that causes the heart rate to increase after getting up from sitting or lying down, causing dizziness, and affects an estimated 0.2 per cent of the UK population. However while rare, Lesley Kavi, retired GP and chair of PoTS UK, tells Sun Health that clinics are increasingly “overwhelmed with referrals”. “[Cases] have certainly increased – part due to Covid infection/long Covid being linked to POTS and possibly also due to increased awareness,” she says. “It’s a malfunction of the way in which the autonomic nervous system regulates the systems within our body like heart rate and blood pressure control. “When affected people stand up, they’re unable to maintain blood circulation against gravity to their heart and brain.” Referring to when he first fell ill, Jack – better known as Culture Force on social media – says: “I was run down and bedbound for a couple of months with it [glandular fever]. “It was around the start of lockdown. I just couldn’t recover and I started to forget what normal felt like.” A trip to a bar with friends when lockdown eased in 2021 took Jack to almost breaking point, leaving him desperate for answers. “It was my first time drinking since becoming unwell, and I was pretty bad at that point,” he says. “I didn’t want to miss out but only just managed to get into my mates car to travel to the bar. “I had one single JD and Coke, but around 30 minutes later, I genuinely felt like I was on another planet. “I’ve never taken drugs, but I remember thinking it must be what a bad trip felt like. “It was one of the worst experiences of my life. “I was living at home at the time and called my mum to ask what was happening to me. From the outside, it probably looked as though I’d been spiked.” While Jack recovered from the episode, the next two years became a succession of doctors appointments and referrals both privately and on the NHS. Jack underwent years of tests and doctors appointments to find the source of his illness Credit: Supplied Pictured – Jack in 2021, who highlighted his arm in this pic to show how underweight he had become as a result of his illness Credit: Supplied After years of testing and appointments, he was diagnosed with postural orthostatic tachycardia syndrome, also known as PoTS. From there, his battle really began, as he realised how misunderstood and debilitating the condition could be, saying: “When I was at my worst, it was completely crippling. Ultimately, I wish people understood that people with PoTS aren’t lazy and they aren’t simply anxious.” It’s not clear what causes it, but you may be more likely to have it if you have a condition such as long COVID, myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), says the NHS. The post-virus link may be behind the post-Covid surge, experts say – and Jack himself did have Covid as well as glandular fever. Since the Covid pandemic in particular, cases have soared. PoTS chair Lesley adds: “It affects people of all ages. Mostly younger women but older women kids and men get it too.” Other symptoms, which may only be relieved by laying or sitting, include near fainting, palpitations, fatigue, and headaches. Chest pain, gut problems and breathlessness are also symptoms. Symptoms can come and go, making it even harder still to spot. “There are a lot of symptoms which can vary in severity and frequency between individuals,” says Lesley. “One of the most debilitating symptoms is difficulty thinking or concentrating; known as brain fog.” But Jack says the brain fog “doesn’t come close to describing it”. “During a bad crash, I can barely think or function. It feels as though there is simply nothing left in my brain or body,” he says. His worst episodes, which he calls “crashes”, last up to four weeks, while some last a couple of days. “Even thinking, eating and carrying out basic everyday tasks could become extremely difficult.” What is postural orthostatic tachycardia syndrome (POTS)? Postural tachycardia syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. Some typical symptoms include dizziness and fainting. PoTS affects a range of people but is most common in girls and women aged 15 to 50. Some people have mild symptoms, while others find the condition affects their quality of life. PoTS often improves gradually over time, and there are some medicines and self-care measures that can help. You can develop PoTS suddenly, or it can begin gradually. You can sometimes get symptoms almost immediately, or a few minutes after sitting up or standing. Lying down may relieve some of the symptoms. Typical symptoms of PoTS include: dizziness or lightheadedness fainting problems with thinking, memory and concentration – this combination of symptoms is often called “brain fog” heart palpitations shaking and sweating weakness and fatigue (tiredness) headaches poor sleep chest pain feeling sick shortness of breath Some people notice that feeling hot, eating, strenuous exercise or having a period can make their symptoms worse. See a GP if you think you may have PoTS. When Jack was particularly unwell before his diagnosis, living with his parents at the time, he became reliant on nutritional supplement drinks. Even after his mum suggested PoTS to doctors, having Googled his symptoms, Jack claims he was told he was “too young and that didn’t want to be labelled with that condition”. But he just wasn’t getting better. “I tired really easily and no matter what, every time I thought I was better and could get back to normal, I’d have a setback and be exhausted and bed bound again,” he says. “It became really frustrating, I’ve never experienced tiredness like it.” A private appointment with a rare diseases specialist in April 2023, after he’d been “passed from pillar to post”, finally gave answers. Jack, an influencer with over 1.4 million followers and 94 million likes, says: “That appointment felt like the last roll of the dice. “Within about 15 minutes though [after some tests], he told me I had PoTS. “After three and a half years of searching for answers, I finally had a diagnosis.” Lesley says for some patients with the condition, it can take even longer. “Half of patients are told that their symptoms are all in their head,” she says. “When they describe so many symptoms at one time and the doctors don’t think to test for PoTS, they assume the problem is psychological. “Even for those diagnosed, often the severity of symptoms and disability is not recognised. “One study found the health-related quality of life in people with PoTS is worse than cancer, HIV, diabetes, COPD, and cardiovascular disease. “Yet patients struggle to obtain benefits when they can’t work, and little NHS care is available for them – in fact, half of patients have to seek private healthcare.” Pictured, Jack with friends on his birthday earlier this year Credit: Supplied Experts believe the Covid pandemic may partly be behind the rise in cases Credit: Supplied Lesley says more needs to be understood about the condition. Jack, who now lives with his girlfriend, says finding out that his condition was life-changing was devastating. At a specialist PoTS clinic in London, he remembers: “I completely blacked out and I almost cried. I never cry, but I was probably closer than I’ve ever been. “[My girlfriend] became really emotional too. It was probably the strangest emotion I’ve ever experienced.” Treatment for the condition is patient-specific, and while Jack was relieved to be diagnosed, it took another nine months before he saw any improvement in his symptoms. “I was put on beta blockers, midodrine, naltrexone, all sorts to begin with,” he says. “The only medication I take now is fexofenadine, which is an antihistamine, and medication for acid reflux.” Jack is determined not to let PoTS claim any more of his life than it has already, stealing him of the university experience. Poor sleep and stress are Jack’s biggest triggers because they affect the nervous system so he has to be mindful of how much he takes on – both with work and socially. “Alcohol, loud music and bright lights can all be triggers for me,” he says. “Another strange trigger is Zara. The lighting in Zara makes me feel awful. “Sometimes it affects my breathing. It’s bizarre, and I avoid it now as it can be the start of an episode for me.” While Jack’s TikTok is primarily about fashion, he says making a video about his condition changed his life, with his first video reaching a couple of million views He says: “The response, especially from younger viewers, was amazing, and so eventually I decided to create a separate recovery account. “Women are often told it’s hormonal, and men are often told it’s a mental health problem. “People are dismissed during the diagnostic process like I was, and that’s incredibly damaging. “One thing that’s always in the back of my mind is that nobody really knows whether symptoms could suddenly become much worse again. There’s still so much that isn’t understood.”