(**May 25 Update: This list now includes Ashley Olsen)
The press reported en mass, via a cover story on People magazine, that pop rock singer Avril Lavigne had spent much of last year severely ill and that she’d been diagnosed with Lyme Disease. “I felt like I couldn’t breathe, I couldn’t talk and I couldn’t move. I thought I was dying,” the star was quoted as saying to People. In her interview with People, she also said: “I had to fight… I had doctors tell me I was crazy and they didn’t want to test me. I had to learn about it completely on my own.”
Welcome to the sad, frustrating world of Lyme patients and those with chronic illnesses in general. And while Lyme is a horrible illness for anyone, famous or not, to have to endure, celebrities like Lavigne are fortunate in that generally speaking they have the innate resources and support system to tackle the problem early on and, in some cases, attain a partial or full recovery. Once acute Lyme becomes chronic Lyme, however, it is far more difficult to treat and even having a lot of money doesn’t guarantee recovery. The good news for all, however, is that on the rare occasion a celebrity comes out with the illness it raises public awareness. And when said celebrities speak of their suffering the public is more likely to become compassionate towards others who have it.
In recognition of this silver lining, here are 19 celebrities, including Lavigne, who either have or have had Lyme disease. The range of their short-term versus long-term suffering varies but we have included them without partiality.
Former actress-fashion entrepreneur Ashley Olsen is the latest celebrity, since Lavigne’s own announcement, to be reported to have a chronic case of Lyme that may have been the cause, at least partly, for her retreat from the public eye since 2012.
According to RadarOnline.com, an anonymous insider has stated that Olsen’s condition is progressively getting worse:
“Her symptoms have gotten worse… She’s had to take a step back from her business. She used to be in the office all the time, but lately she’s often just not well, so she rests a lot at home. She’s really having a difficult time. […] She’s really struggling, and it comes out in anger — she’s at the point where she’s having a hard time dealing. She just seems all-around cranky. Between her pain and her exhaustion…”
One celeb who has been quick to publicly offer her sympathies and support to Lavigne is Debbie Gibson who was diagnosed with Lyme in 2013. In her own interview with People (which is, intentionally or not, becoming one of the media outlets most helpful to Lyme awareness), Gibson talked about some of the pain and cognitive difficulties that often afflict those with Lyme:
“My back kept going out, I couldn’t lift my head sometimes. My boyfriend said I was mixing up words in my texts. It really got into my cognitive skills. I took crazy amounts of antibiotics, including doxycycline. It killed so much stuff in my body that I became a shell of myself.”
Although People reported last year that Gibson has made dramatic improvement, her tweet to Lavigne suggests she’s not entirely out of the woods yet.
Another musician to have had Lyme is Neneh Cherry, though there is far less media coverage of her experiences that can be easily found online. The singer came down with it back in 1989 shortly after the release of her breakout album Raw Like Sushi. At the time, far less was widely known about the disease that some people called it the “Neneh Cherry Disease.” Based on her Twitter account feed, and the level of public performances, it seems reasonable to assume that either she has been mostly cured or has it under enough control to live a functional life.
One can only hope that Lavigne will be as much an activist for Lyme awareness as punk singer Kathleen Hanna has been. Hanna, who was diagnosed with late stage Lyme in 2005, has been struggling with the illness on an ongoing basis, even cancelling a planned 2014 tour to focus on treatment. “Late stage Lyme disease has wreaked havoc in my life and stolen much of my career,” she has said. She also told KQED that life in recent years has been more about “living day to day.” Her fight with Lyme has been partly documented in the film The Punk Singer. She recently also did the #LymeDiseaseChallenge which, modeled after the ALS ice bucket challenge, seeks to raise money and awareness for Lyme research.
“It can make you wanna die if you’re not dead,” Daryl Hall of the band Hall & Oates has said of the Lyme experience. He has also said that the lack of widespread recognition of the severity of chronic Lyme (as opposed to just acute Lyme) is “almost a bad joke” to anyone who actually suffers from it. Hall was diagnosed with Lyme in 2005, causing him to cancel a Hall & Oates tour that year. As with Amy Tan (see below), he has become a vigorous and outspoken critic of the medical establishment’s approach to Lyme and has spoken about it repeatedly whenever he has appeared on his friend Howard Stern’s radio show.
In a recent interview with Bravo‘s Daily Dish, Yolanda Foster said, “”I took Avril under my wing when she first got sick and shared all I know… I am so proud of her for going public and helping us bring awareness to this debilitating disease.” Apparently, Lavigne and the star of Real Housewives of Beverly Hills have been friends for a number of years, the singer even performing at Foster’s wedding in 2011. Aside from being a mentor to the afflicted Lavigne, Foster has helped raise awareness of Lyme through her social media presence, openly posting pictures of herself in the hospital getting treatment on Instagram and such.
Richard Gere is an example of a very successful case of early Lyme detection and treatment. The actor had to postpone filming Autumn in New York in 2000 with Winona Ryder while resting and taking a course of antibiotics. Sources indicate that he made a full recovery with no chronic symptoms, but the experience did not leave him unscathed:
“This is one scary disease. I felt as though every ounce of strength had gone from my body… Just turning my head to see the time on the clock was a major operation. I felt as if my life was going in slow motion.”
Ben Stiller was tentatively diagnosed with Lyme in 2010 when a lingering knee injury became increasingly painful and wouldn’t go away. That he didn’t complain of other symptoms suggests that it didn’t become late stage, chronic Lyme. In a 2011 interview with The Hollywood Reporter the actor said that he was treated and was now symptom free.
Actress Parker Posey was diagnosed with Lyme in 2009 and had to drop out of a stage production at the time. Posey has famously championed alternative treatment modalities for Lyme after a standard round of antibiotics did not eradicate her symptoms. She became part of a documentary film called Rethinking Cancer which profiles five cancer patients and one Lyme patient (Posey) who have made successful progress and defied pessimistic prognoses from their doctors through various alternative treatment methods.
Karen AllenThe erstwhile companion to Indiana Jones has called Lyme “a devastating disease that has reached epidemic proportions,” an assessment supported by various Lyme literate doctors like Jane Marke, MD, who has compared the severity of the illness to AIDS. Like Posey, Karen Allen has promoted the use of alternative medicine to treat Lyme and has been a public advocate for Lyme awareness as in the public service announcement video above.
The former Sopranos actress became sick with Lyme while filming an indie film called Campfire Stories in 2000. As with Gere, her infection was detected early and she was able to recover using antibiotics but she has said, “It was such a life-altering experience… I realized it could all be taken away in a moment. It’s hard to explain…” Jamie-Lynn Sigler has also written about the experience in her memoirs Wise Girl: What I’ve Learned About Life, Love, and Loss.
Tony Award winner and two-time Emmy Award winner Jane Alexander believes she has had Lyme disease twice, though the ability for the disease to be dormant at least suggests that perhaps it had never been fully eradicated to begin with. She became involved with a 2008 documentary film called Under Our Skin which sought to educate the public about the illness. In 2009 it became a semi-finalist in the Academy Awards for Documentary Feature, though it did not go on to be nominated.
The Calvin Klein model and humanitarian contracted Lyme in 2007 but it was spotted early and successfully treated using a course of antibiotics. There has since been no public indication or mention of it having affected her life in recent years.
International Tennis Hall of Fame inductee and three-time Grand Slam winner Jennifer Capriati revealed she had Lyme in 2013 on Twitter. She stated that she has probably had it in her system for some time before the diagnosis and believes it may have even been the cause of her tennis-related injuries and subsequent emotional distress (over the past few years Capriati had been involved in a number of incidents involving drug overdose and charges of stalking her ex-boyfriend, Ivan Brennan Jr., which were dropped after she completed a course of community service and anger management counseling). Since her announcement she has been open on Twitter about how difficult the illness has been and the irony of how much work it takes to address it while in such an exhausted state:
George W. Bush
Regardless of whatever one may think of his presidency, G.W. Bush was nevertheless a high profile case of Lyme. Back in 2007, the White House disclosed that former president Bush had been treated for Lyme in 2006. It had been detected early and eradicated, but the details of Bush’s treatment protocol were not divulged. This did not go unnoticed or without controversy. In an op-ed piece, The Guardian wondered aloud what the secrecy was necessary for. Their concern was valid. For instance, insurance companies typically do not pay for the treatment of Lyme beyond two weeks even though tens of thousands of patients in the U.S. complain of lingering and/or worsening symptoms long after the covered treatment they are initially given. This means that patients have to resort to paying out-of-pocket if they want to continue treatment, a situation compounded by the fact that many of them are unable to work. If Bush had been treated beyond the usual two-week regimen taken for granted by the mainstream medical and insurance industry, then it would call into question the practice of denying coverage to insured Lyme patients beyond just two weeks.
We end this list with a trio of writers. And perhaps because their chosen medium is the written word, their shared experiences are often the most detailed and eloquent. Rebecca Wells was struck down by Lyme shortly after her rise to fame with Divine Secrets of the Ya-Ya Sisterhood. Her symptoms included dizziness, hyperacusis (acute sensitivity to sound), respiratory issues and multiple chemical sensitivity in which even a whiff of perfume became unbearable. She saw 12 doctors over seven years before finally being diagnosed in 2004. Since then she has found value in living a simple, quiet life and found that she was able to resume writing when she focused her energies wisely. In spite of her challenges Wells has done quite well for herself, finishing two books since being stricken with Lyme—Ya Yas in Bloom and The Crowning Glory of Calla Lily Ponder—and has offered the following kernels of wisdom on her blog:
“Illness and the love I have been given have taught me about the need for tenderness. I know more deeply that we all need more compassion and kindness than this fast, consumer-driven world encourages.”
Alice Walker is self-diagnosed as having Lyme, but the self-diagnosis of any reasonably intelligent individual who has done her research is arguably valid given the mind-boggling amount of time, money, effort and stress often involved in finding a doctor willing to simply take the right kinds of tests. On her blog, the author of The Color Purple has written about how her symptoms manifested themselves at a time when there were already numerous other stress factors causing strain in her life:
“[It] brought me to my knees. At the same time critics pilloried me: my work, it appeared, severely offended them. Moreover, my love life crashed around my feet. Still, one day, after years of being under a cloud of sickness and censor, I realized I was not only rising from my ashes, but shining. From that time to this I’ve lost the need for lengthy prayers. I have only one, but it is constant. Thank You, I say, before eating, working, moving. Loving. Thank You. It is enough.”
In other words, her entire life came crashing down around her, but it was in the midst of such ruin that she found grace.
The author of The Joy Luck Club has written extensively about her experiences with Lyme on her official site and in articles like this one for The New York Times. As with her colleague Wells (see above), Amy Tan’s symptoms included pain, fatigue, nausea, depression, hypersensitivity to sound and smells, blood sugar instability and cognitive impairment. “I could not read a paragraph and recall what it said,” she once wrote. “I wrote in circles, unable to tie two thoughts together, never mind the plot of a novel.” After four years of searching, 11 doctors and $50,000 spent in medical bills, she found a Lyme literate doctor in 2003 and has since gotten her life back but is still not completely cured. Admirably, using her gifts with language she has become a visible advocate for Lyme awareness and research:
“Ten years have passed since I was diagnosed, yet little has changed in the way medical schools, H.M.O.’s, private practitioners and insurance companies view the disease. It is still frequently misdiagnosed and patients with chronic suffering remain overlooked… We need to revise the [medical industry’s] guidelines based on new research and the plight of those who have suffered from the disease, some of whom have lost their jobs, their homes, their marriages and even their lives.”
Amen to that, Amy.[coffee]