This week, model Bella Hadid shared a candid update about her ongoing battle with Lyme disease. The illness, which is caught from a tick bite, is thought to affect over 14% of the global population according to the British Medical Journal.
26-year-old Hadid, who was diagnosed with the condition in 2013, shared on Instagram that she’s “not giving up” on her health. Thanking her mum for her ongoing support, she wrote: “Living in this state, worsening with time and work while trying to make myself, my family and the people who support me, proud, had taken a toll on me in ways I can’t really explain.”
Reflecting on how she now feels like she has a “full cup” and good health for the first time in her life, she continued: “I have so much gratitude for and perspective on life, this 100+ days of Lyme, chronic disease, co-infection treatment, almost 15 years of invisible suffering, was all worth it if I’m able to, God willing, have a lifetime of spreading love from a full cup, and being able to truly be myself, for the first time ever.”
Her brother Anwar and mum Yolanda both have the debilitating illness too, alongside singer Kelly Osbourne. So, what actually is Lyme disease and how does it affect those who catch it? Keep scrolling.
Your need-to-knows about Lyme disease
What is Lyme disease?
As per the NHS website, Lyme disease is a bacterial infection that can be spread to humans by infected ticks.
While they stress that it can be treated, they emphasise that it’s easier to treat if caught and diagnosed early.
What are the symptoms of Lyme disease?
Symptoms to look out for include:
- A high temperature
- Feeling hot and shivery
- A headache
- Muscle and joint pain
- Tiredness and loss of energy.
Lyme is also identifiable by a distinctive circular rash at the site of the tick bite which will appear three to 30 days after being bitten.
That said, one in three people won’t develop a rash at all – problematic, as if the illness goes unnoticed and untreated, the infection can develop into a more serious condition known as post-infectious Lyme disease. Symptoms of post-infections Lyme include neurological problems, such as poor concentration and memory loss, extreme fatigue, headaches, muscle and joint pain, swollen glands, night sweats, and more.
Long-term symptoms are also been referred to as chronic Lyme disease. However, the medical community is divided over whether chronic Lyme disease exists – something that is frustrating for sufferers who describe their symptoms as all too real. Hadid has said of her chronic Lyme: “I know what it feels like to not want to get out of bed because of bone pains and exhaustion, and to not want to socialise or be around people because the anxiety and brain fog just isn’t worth it.”
How do you get tested for Lyme disease?
Good question. Many of the symptoms of Lyme disease are similar to other conditions, making it difficult to diagnose.
In the UK, two types of blood tests are used to be sure of an accurate diagnosis. If spotted early on, patients will usually be given a two to four-week course of antibiotics to treat the condition.
That said, there is currently no clear consensus on the best treatment for post-infectious Lyme disease.
Which celebrities have Lyme disease?
Alongside Bella Hadid and her brother and Mum, Anwar and Yolanda, stars including Kelly Osbourne have been open about their diagnosis, rallying for better testing and treatment options.
Osbourne was bitten by a tic at a surprise birthday party for her husband, Ozzy Osbourne, in 2004. She suffered from symptoms including a sore throat, abdominal pain and seizures for a decade before she received an accurate diagnosis.
Speaking on the illness, she’s said in the past: “What annoys me is that this is a real, real disease. It almost killed me. I will do anything to raise awareness for it, because I almost died from it, and it’s a debilitating disease that most of the time goes misdiagnosed.”
Yolanda has added: ‘We all pull together so beautifully for HIV. Lyme is three times more prevalent right now, it’s a worldwide epidemic and yet we haven’t done anything about it.”
“I lived with Lyme disease for nine years and was told it was all in my head.”
Olivia, 27*, suffered from Lyme disease for nine years but was often told by doctors that the symptoms were in her head.
“I suffered from Lyme disease for nine years. Without doubt, one of the most frustrating things was being repeatedly told by doctors that my symptoms were “in my head.””
“I first got sick when I was 11 years old. Every doctor I went to told me that I was depressed or trying to get out of school. It took a year and a half before I was diagnosed with chronic Lyme disease and even then, I found that my treatment options were limited.”
“For many like myself, Lyme is an invisible disease. I often appear to be healthy and functioning while on the inside I’m dealing with constant pain, extreme fatigue, restless legs and more. Every night I go to bed not knowing how my body is going to feel the next day, making things like attending university or having a job extremely difficult. The NHS has limited treatment options for chronic Lyme disease, leaving many patients hopeless and with little or no options.”
“As sufferers of Lyme disease know, the testing is outdated, inaccurate, and unreliable – it often takes people years to get diagnosed. Because of this, more doctors are turning towards a clinical diagnosis rather than relying on test results (these, more often than not, come back negative). This is because borrelia (the Lyme disease bacteria) is hard to identify and will not always show up in the patient’s blood, or the patient may have a different strain of Borrelia than the test is looking for.”
“Some laboratories, such as Armin Labs in Germany, are more accurate in identifying tick-borne infections through blood tests that have been overlooked by other labs. That said because not all labs correctly identify cases of Lyme disease and many doctors only treat based on the “standard” blood tests, an increasing number of patients are now looking for alternative methods of treatment.”
If you’re worried that you might be experiencing Lyme disease symptoms, do book an appointment with your local GP who’ll be best placed to advise on diagnosis and treatment options. Remember – help is out there.
What does Lyme disease do to a person?
As above, symptoms include flu-like symptoms and a distinctive circular rash. If left undiagnosed and untreated, symptoms can worsen, leading to fatigue, poor concentration, memory loss, headaches, muscle and joint pain, swollen glands, night sweats, and more.
If you are concerned you might have the disease, do book an appointment with your GP.