Lyme Disease Is On The Rise In The UK: 3 Women On Living With It

Avril Lavigne has it, Alec Baldwin has it, and, needless to say if you follow pop culture, Real Housewife of Beverly Hills Yolanda Hadid and two of her three children, Bella and Anwar, have it (you may have seen one of her many Instagram posts over the years). Lyme disease, that is. Hollywood celebrities, models and pop stars have become the most outspoken global advocates for raising awareness of the infectious bacterial disease, spread to humans through ticks, which can result in debilitating symptoms like tiredness, aches and loss of energy.

But it's not just People magazine cover stars who contract the mysterious disease, which many argue has become something of an identity in itself. But behind the artfully edited shots of breakfasts and rugged landscapes under the #lymewarrior Instagram hashtag is a painful and often life-changing illness – and more people in the UK are living with it than you might think.

New research published in the BMJ Open suggests that there may be three times as many cases of Lyme disease in the UK as previously thought. Based on analysis of 8.4 million people’s anonymous medical records, scientists believe there could be more than 8,000 diagnoses in 2019, compared with the 2,000-3,000 annual diagnoses previously estimated.

If diagnosed early – when it often causes flu-like symptoms including headaches and aching muscles, and a circular target-like red rash – Lyme disease can be treated with antibiotics, but in the worst cases it can cause tiredness, aches and loss of energy that lasts years, and even permanent nervous system and joint damage.

The summer months – between June and August – accounted for half of all Lyme disease diagnoses, and cases were found in all UK regions, though the highest number were found in Scotland (27%), where wet weather and hiking are more prevalent (ticks thrive on plants in moist areas and are attracted to bare skin).

Given that the disease is so easily contracted at this time of year (through an infected tick biting you), it's crucial to follow the advice of charities like Lyme Disease UK, LymeAid UK and Caudwell LymeCo, all of which recommend wearing long sleeves and covering your legs while walking through long grass, spraying clothing and yourself with insect repellant in grassy areas, and checking for ticks when you get home.

The prevention advice may apply to us all equally, but everyone's experience of the disease is different. Ahead, three women share how the diagnosis changed their lives.

"During that week I felt sick and completely went off my food, which never usually happens. By the time I got back to Leeds, I was incredibly tired but thought I was worn out from two holidays back to back. By 21st September I couldn’t move my face and had facial paralysis on both sides – I was worried my face would scare children. I went to A&E in Lincoln, where my symptoms were dismissed as facial swelling or inflammation and I was sent home and told to keep on with the antibiotics. It got worse until I had severe pain all through my head and neck. I was eventually referred to A&E through my mum’s GP and ended up in hospital for just over a month.

I never thought about Lyme disease during the summer when I had flu-like symptoms and was feeling tired. I assumed I was doing too much with work and training for a marathon, and it was incredibly hot in the UK last summer. I only thought it could be Lyme when I was in hospital; I was actually happy to be diagnosed because the other options were so awful and debilitating that it seemed the best of a bad bunch.

I was treated with Lyme-specific antibiotics straightaway so I knew I might be able to beat the disease, but that it would be a long process to see whether the nerves in my face would ever fully recover. I'm nearly halfway through what I’ve been told will be a two-year process of nerve recovery. I can move my lips and cheeks to smile, I can eat food without it dropping from my mouth and I can drink from a glass without always needing a straw. I'm fortunate not to have any of the other longer term debilitating symptoms.

Before all this, I didn't realise you could get Lyme disease without having the bullseye rash, or that facial paralysis was a side effect. My friends and colleagues weren't aware either. The testing isn't great – the first of my two tests came back negative. I was lucky that my consultant had experienced Lyme and knew about the issues with testing in the UK."

"Looking back, I was showing the early signs of Lyme but I never associated it with the disease because we'd never heard of it – despite my family coming from a crofting background. It started with what we thought was a summer cold, which slowly turned into terrible joint and bone pain. I started to lose my memory and sitting in a classroom full of people that I’d known for six years, I couldn’t tell you who any of them were. I'd find myself in the school corridor unaware of why I was there, and I struggled to speak. I’d go home and collapse on the couch with exhaustion after school. I was forced to drop out of school at 16 because I'd become so physically frail that I was struggling to walk by the time I got home each day.

My blood tests kept coming back as negative for Lyme disease so I was wrongly diagnosed by the NHS several times. Eventually we learned that blood tests are hugely inaccurate for Lyme disease. With nowhere else left to go within the NHS, I was bed-bound by the time I was diagnosed with it at a private clinic – even just getting there was a massive challenge. The numbness I felt when I first received the diagnosis soon turned to anger because I’d lost so many years of my life by this point. I'd gone from a vibrant teenager who was going to go to university to a bed-bound cripple who could hardly walk from her bedroom to the bathroom unaided and who struggled to speak.

This disease has had a profound effect on my mental health. A big symptom of Lyme disease is depression and anyone who has had this disease and says it’s never gotten them down is lying. I’ve been on around nine years of treatment now and it’s only been the last two or three years that I’ve seen improvements in my health. My life is still dominated by the disease, but I can’t express how wonderful it is to be able to leave my home, sit with my friends and be part of the world again. Writing has been a lifeline throughout, transporting me to a world that the Lyme disease couldn’t taint."

"I can't be sure what I was doing when I contracted Lyme, but I was in Antigua and always off the boat and outside when I wasn't working: running, walking and cycling around overgrown paths and tracks, on the beach and grassy hillside. I was always wearing shorts or skirts and flip-flops, and didn't know anything about the disease, so I never thought twice about the dangers. I knew I had to wear insect repellant in the evening to prevent mosquito bites, but not once did anyone mention ticks.

At the time, I could only describe the symptoms to my captain and crew as the worst case of flu, multiplied by 10. I was horizontal in my bunk and drenched in sweat, with an excruciating headache, whole body aches, no appetite, fatigue and more. I had to ride it out until we docked in Europe, when I saw a doctor. Getting a diagnosis from the NHS proved impossible because I tested negative on their Lyme test, despite evidence to the contrary from a lab in the US. I was abandoned by the NHS, who couldn't explain why I was sick. The lack of understanding of the disease among UK medical professionals was mentally and physically traumatic, not to mention scarring.

I'm not ashamed to say Lyme disease has affected my mental health. Many times throughout my seven-year battle it's seemed impossible to carry on fighting, but I can’t give up. The disease has shown me that although I can feel vulnerable having a chronic illness, I'm also far stronger than I think.

Saying that, I've lost some independence by having to move home with my parents. I feel like a teen at 34. I'm too ill to work, so I have no income. I've lost a lot of friends – suddenly, when you can’t go out and have fun, you're less appealing. People become bored of you still being sick and they drift away when you need them the most, which hurts. My career dreams have been shattered – dancing on stage seems like a past life, and walking up stairs and taking a shower is exhausting. I spend a lot of time isolated in my house or bed. During many weeks, the only time 'out' will be at medical appointments, which take all my energy mentally and physically, as more of my body seems to get destroyed from the effects of the disease.

People find it hard to understand an illness that’s mostly invisible. Most of my symptoms aren't visible if you passed me on the street, so people can't comprehend the pain and illness you may be suffering. Before treatment I looked very ill, but now you wouldn't necessarily know by looking at me. Last month, multiple people told me I looked well, then 24 hours later I was being rushed to hospital in an ambulance. Chronic Lyme disease is unpredictable, challenging and life-changing."