The widespread illness is often considered the “great imitator” because its symptoms typically mimic other health conditions like rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, and others.
Getting a proper Lyme disease diagnosis remains challenging because testing is often inconclusive, potentially leaving those impacted to suffer for weeks, months, or years before being correctly treated. Although treatments do exist, there is no cure.
Here are 14 celebrities who have spoken out about their experiences with Lyme disease, helping to shed light on this mysterious tick-borne illness.
Avril Lavigne went public with her Lyme battle in 2015 and is now an advocate for those with the illness.
Lavigne opened up about her struggle with Lyme disease in a June 2015 interview with “Good Morning America,” revealing that she’d been bedridden in October 2014. She called that the “worst time” in her life after seeing specialists and doctors who misdiagnosed her with chronic fatigue syndrome and depression.
In October 2018, the “Complicated” singer told Billboard she felt unwell during her 2014 tour. She recalled thinking, “I’m achy, I’m fatigued, I cannot get the f— out of bed – what the f— is wrong with me?” as her symptoms progressively got worse.
During one of her darkest days battling with side effects of the disease, Lavigne said she wrote her 2018 song “Head Above Water,” telling Billboard, “I had accepted that I was dying … And literally under my breath, I was like, ‘God, help me keep my head above the water.'”
Lavigne has also started the Avril Lavigne Foundation, which aims to bring awareness to those dealing with Lyme and other serious illnesses and disabilities.
She told “GMA” viewers that might be suffering, “There is hope. Lyme disease does exist and you can get better.”
Ben Stiller also had trouble getting an accurate diagnosis.
In 2011, Stiller told The Hollywood Reporter about his Lyme disease saying, “I got it in Nantucket, Massachusetts, a couple of years ago. My knee became inflamed and they couldn’t figure out what it was, then they found out it wasLyme.”
He says he’s now symptom-free but notes that Lyme will never leave his system.
Shania Twain says her battle with Lyme has impacted her career.
Twain dominated the pop and country charts in the 1990s and early 2000s, but by 2004, she’d contracted Lyme disease, which she attributes to issues with her vocal cords.
In 2017, she told Canadian news outlet CBC that she was bitten by a tick when on tour in Norfolk, Virginia. She said she saw a tick fall of her and she immediately began to see troubling Lyme disease symptoms pop up.
“I was on tour, so I almost fell off the stage every night. I was very, very dizzy and didn’t know what was going on. It’s just one of those things you don’t suspect,” she added.
It took Twain years to figure out that she had dysphonia, a neurological disorder of the vocal cords in which muscles can spasm and impact speech, which she attributes to the Lyme bacteria.
She now warns others about the disease.
“[Lyme] is very dangerous because you have a very short window to catch it and then treat it and then even when you treat it, you could still very well be left with effects, which is what happened to me,” Twain told CBC. “It’s a debilitating disease and extremely dangerous. You can’t play around with it, so you’ve got to check yourself for ticks.”
In 2017, she prepared for a musical comeback and began advocating on behalf of fellow individuals with Lyme disease, telling E! News it’s “such a silent evil thing.”
Kelly Osbourne went undiagnosed for nearly a decade.
The former reality star has been open about her addiction to prescription drugs, but in her 2017 book “There Is No F*cking Secret: Letters From a Badass Bitch,” Osbourne reveals she’d unknowingly been battling Lyme disease for years, too.
She explained that her mum, Sharon, purchased her dad, Ozzy, a reindeer sanctuary for their home in England for his 56th birthday in 2004. She said shortly after she was bitten by a tick, which Ozzy burned off of her.
For years after, she experienced “travelling pain,” ranging from stomach aches to a sore throat.
Osbourne revealed that doctors simply kept giving her prescriptions even though she suspected she was battling Lyme. An alternative medicine specialist finally tested her and after her positive diagnosis, she flew to Germany for stem cell treatment.
Osbourne wrote that she was initially afraid to speak publicly about Lyme disease because “it seems like the trendy disease to have right now, and I’m tired of seeing sad celebrities play the victim on the cover of weekly mags,” but that she now acts as her own health advocate.
Ally Hilfiger battled the disease for decades and chronicled her journey in a memoir.
Osbourne is not the only reality star to deal with Lyme disease – the former “Rich Girls” star went misdiagnosed for a long time after being bit by a tick at 7 years old in 1992.
In her book “Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me,” Hilfiger chronicles her battle with the invisible illness and the all-too-visible symptoms that followed.
In 2016, she told Health magazine, “I remember getting bit by a tick and my parents sent it off to the labs. And we got inconclusive tests back.”
For 10 years, she says she multiple doctors gave her a variety of diagnoses from fibromyalgia to rheumatoid arthritis.
The emotional battle is just as hard as the physical one, according to the fashion designer.
“One of the biggest issues I think a lot of Lyme sufferers have is that some days you can have good days. And other days you can feel really feel horribly and not be able to get out of bed,” she told Health. “And sometimes you start to doubt whether or not you’re really feeling what your feeling, if that makes any sense. And you feel disbelieved.”
These days, she’s doing much better, telling the magazine that finally receiving the correct diagnosis felt like she “won the lottery.”
In 2014, Debbie Gibson revealed she’d been privately battling the illness.
After fans expressed their concern about her appearance in social media photos, Gibson took to her blog in April 2014 to give an update on her health, revealing that she’d begun experiencing symptoms in early 2013. She said she first felt anxiety and sensitivity to certain foods.
Then, she said she began feeling unique pain and muscle fatigue she’d never had before. She added, “I got tested for everything under the sun, though it did not occur to me, or my West Coast doctors, to test for Lyme. It is typically an East Coast thing.”
Gibson began losing weight and experiencing symptoms of depression, adding, “I could barely walk. I started feeling numbness and tingling in my hands and feet, which is very disconcerting for a pianist and dancer, to say the least. Night sweats, chills, fever, nerve tremors, nightmares, and migraine headaches were at a fever pitch without a minute of relief.”
After a lengthy journey to find the correct diagnosis, the “I Love You” singer was able to begin treatment. But, she is still aware that she has to take care of herself and her health.
She joined the cast of “Dancing with the Stars” in 2017, telling People magazine, “I can’t be cavalier with my body. I can’t just push myself without thinking what happens next. [Lyme Disease] can affect my stamina,” she said. “I’ve always been in tune with my body. But the last few years have helped me learn where I can push my limits. I’m going to choose to think of that as an advantage!”
Alec Baldwin opened up about his years-long battle with Lyme in 2017.
During a 2011 interview with The New York Times, the “Saturday Night Live” actor mentioned that he had chronic Lyme disease.
Baldwin didn’t mention his diagnosis again until 2017 when he spoke onstage at an event benefiting the Bay Area Lyme Foundation. According to People magazine, he told the crowd he’d been bitten by a tick 17 years prior and was bitten again a few years later.
“I got the classic Lyme disease(symptoms) for each successive summer, for five years, every August, like [these] black lung, flu-like symptoms, sweating to death in my bed,” he said.
“The first time was the worst of all,” he recalled. “And I really thought, ‘This is it, I’m not going to live.’ … I was lying in bed saying, ‘I’m going to die of Lyme disease,’ in my bed.'”
Now, he says he and his wife, Hilaria, remain vigilant about checking their dogs and children for ticks.
Jamie-Lynn Sigler battled Lyme disease before learning she also suffered from multiple sclerosis.
When Sigler was 19 years old and starring on HBO’s hit “The Sopranos,” she learned she had Lyme disease.
Shortly after, in 2016, she told People magazine, “I was diagnosed with MS (multiple sclerosis) when I was 20 years old. It was a shock, it was surprising.”
“I had been diagnosed with Lyme disease the year before, so to get the diagnosis was confusing, and also strange because I didn’t feel sick. I didn’t feel that anything was wrong.”
She’d taken antibiotics, a standard course of treatment for early-stage Lyme, “and things had started to go away,” she shared.
Sigler now advocates on behalf of those with chronic illnesses.
Daryl Hall was diagnosed with Lyme disease in 2004 and has opened up about his experiences.
In 2005, the duo Hall and Oates canceled a tour, revealing that Hall had been diagnosed with Lyme disease. In 2011, he opened up about his experiences, explaining how he contracted the disease and his journey to health.
“I got it the way everybody gets it,” he said. “I’ve lived in the country for many, many years … it’s a hotbed of deer and other wildlife animals. I’d been bitten over the years so many times and I think it finally reached a critical mass and I crashed and burned about five years ago.”
He experienced a wide range of ailments, from allergies and fever-like symptoms to aches, pains, and tremors. After being tested, he learned he had “six or seven tick-borne diseases.”
Hall started to research on his own and saw a Lyme literate doctor who helped treat him.
He advises individuals with constantly changing symptoms “to get tested for Lyme disease because the symptoms mimic so many other things.”
Thalía Mottola began feeling ill during her first pregnancy in 2007 and became unable to care for her newborn daughter.
Mottola spent most of the ’90s and early 2000s dominating the Latin music charts, but in 2007, at the end of her first pregnancy with her daughter, Sabrina, the “No Me Acuerdo” singer began feeling unwell. By the time she gave birth, she was unknowingly dealing with a full-blown case of Lyme disease.
In her 2011 memoir “Growing Stronger,” she explains that doctors tried to convince her she was suffering from postpartum depression, writing, “I continued to feel like I had been run over by a truck that had dragged me for a thousand miles, along with a steamroller that had crushed every last bone in my body. I literally thought I was dying.”
When she found the energy to research online, she started seeing Lyme specialists, eventually undergoing two years of “heavy treatments.”
Fortunately, her treatment seems to have helped with some symptoms as she is back to releasing albums and touring around the world.
Kris Kristofferson experienced several misdiagnoses before being treated for Lyme.
In 2016, the music legend and his wife revealed in a Rolling Stone interview that he’d been diagnosed with Lyme disease just shy of his 80th birthday. His wife, Lisa, told the magazine she believed he’d been bitten by a tick while filming the 2006 movie “Disappearances” in Vermont.
“He was taking all these medications for things he doesn’t have, and they all have side effects,” she shared, talking about medications he was taking for depression and Alzheimer’s disease.
After three weeks of Lyme disease treatment, Lisa noted that “All of a sudden he was back,” adding that he still struggles some days but “some days he’s perfectly normal and it’s easy to forget that he is even battling anything.”
Kathleen Hanna battled Lyme disease for over a decade before being properly diagnosed.
Kathleen Hanna stepped away from her band, Le Tigre, in 2005, citing personal health issues as the reason for her hiatus. But what she didn’t know then was that she was struggling with chronic Lyme disease– the musician finally received her diagnosis in late 2010.
She experienced debilitating symptoms over the course of several years that made her unable to move or speak at times and she began to heal after two years of “intensive therapy,” according to The New York Times.
After multiple misdiagnoses – from multiple sclerosis to lupus and panic attacks – she saw a 2008 documentary called “Under Our Skin” about the unspoken Lyme epidemic and realised that a tick bite she got in 2005 could still be causing her health problems, even though she’d been treated with a standard course of antibiotics for Lyme disease at the time.
In 2013, Hanna returned to the public eye and in 2016 she formed a new band, Julie Ruin.
Yolanda Hadid is one of the most outspoken celebrity voices spreading awareness of the disease.
Hadid was a cast member on “The Real Housewives of Beverly Hills” in 2012, but viewers didn’t know that behind the scenes she was struggling with symptoms of chronic Lyme disease.
She was finally diagnosed in 2015 and began publicly advocating for those with Lyme while trying to regain her own health, noting that she suffered from debilitating neurological and physical symptoms. She has travelled around the world in search of a cure and she’s chronicled some of the recovery process on the Bravo reality series.
Eventually, she left the show, choosing to focus on her recovery and advocating on behalf of others also struggling. She also penned a memoir called “Believe Me: My Battle with the Invisible Disability of Lyme Disease.”
Bella Hadid also battles Lyme disease.
In late 2015, after going public with her diagnosis, Yolanda revealed that two of her children, Bella struggled with Lyme disease, too.
Bella Hadid told the Evening Standard of her diagnosis, “It was a dark time … I was exhausted all the time. It affected my memory so I suddenly wouldn’t remember how to drive to Santa Monica from Malibu where I lived. I couldn’t ride [horses]. I was just too sick. And I had to sell my horse because I couldn’t take care of it.”
But, she said she’s been receiving treatment.
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