Last week, the New York Times ran an article written by a mother whose 9-year-old son contracted Lyme disease. Her message: Those who view Lyme as a debilitating, chronic illness are wrong. In reality, it’s an “easily treated infection with no long-term consequences for children, or even the vast majority of adults.”
If you know anyone who’s been diagnosed with Lyme, you’ve likely heard a different version of the story. Many diagnosed with the tick-borne illness claim to live with chronic, life-altering symptoms, such as seizures and arthritic joints, even after treatment. Apoorva Mandavilli, the writer behind the Times article, said her intention was “not to trivialize Lyme disease,” but based on the internet’s reaction, that’s exactly what she did.
“I am shocked, truly, that such an established news outlet would publish something so misinformed, false, and cruel to those of us who suffer every day,” influencer Jordan Younger wrote on Instagram alongside a video of her in the hospital. “This video is me less than a year ago after having my uterus operated on due to extreme hormonal complications from Lyme. I was in bed for months after this, and for months before this.”
Younger went on to say she had to fight for years to get answers as to what was wrong with her because doctors like those quoted in the Times article “promote the false notion that chronic Lyme disease doesn’t exist.”
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dear @nytimes, it was brought to my attention that you published an article this weekend perpetuating the false belief that lyme disease is easily treatable, no big deal, and “great news” to receive as a diagnosis. i am shocked, truly, that such an established news outlet would publish something so misinformed, false, and cruel to those of us who suffer every day. this video is me less than a year ago after having my uterus operated on due to extreme hormonal complications from lyme. i was in bed for months after this, and for months before this. there were countless times that i believed i was dying and for YEARS had zero answers for what was wrong — because doctors like dr. eugene shapiro (quoted in your article) promote the false notion that chronic lyme disease doesn’t exist. this is what real chronic lyme disease can look like — i am very glad that this writer’s son healed quickly from early diagnosed lyme but that certainly doesn’t speak for the disease as a whole. all we can do is keep sharing our stories, and hope that writers like @apoorva_easdon think twice next time before inaccurately portraying a disease she knows dangerously little about. the media continues to baffle me, and it’s very clear that big pharma is behind this and is afraid of people truly HEALING. but we will all keep sharing the truth and persevere. 💘 #tbbmademedoit #soulonfire #lymediseaseawarness #lymewarrior #NYtimes
Another Instagrammer, @trishapeightal, wrote that the Times article “does nothing but add to a cycle of trauma and despair, a cycle I have been unknowingly living for over [a] decade.” She explained that she spent years trying to get a diagnosis, and it was only recently that a doctor finally determined she had Lyme.
“My symptoms are ugly: extreme pain, weakness, numbing and loss of sensation in my arms and feet, neurological issues to the point where I was forgetting my address or how to get home, heart palpitations, uncontrollable weight gain, brain fog that affected my work daily, and so many other uncomfortable and random things,” she wrote.
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I saw the article the @nytimes posted about lyme disease and have been sitting with it for a few days trying to make sense of how or why. The article titled “My Son Got Lyme Disease. He’s Totally Fine” written by @apoorva_easdon does nothing but add to a cycle of trauma and despair, a cycle I have been unknowingly living for over decade. And it was not for a lack of trying that left me unable to get a proper diagnosis, I saw hundreds of doctors, landed in hospitals a truly countless number of times, and have bloodwork dating back to when I was a teenager showing the same chronic deficiencies that still effect me to this day. 5 months ago I was diagnosed with late stage lyme disease (and a NUMBER of other infections/complications that came as a result of going undiagnosed and misdiagnosed for so many years) and have been treating my condition aggressively ever since. My symptoms are ugly: extreme pain, weakness, numbing and loss of sensation in my arms and feet, neurological issues to the point where I was forgetting my address or how to get home, heart palpitations, uncontrollable weight gain, brain fog that affected my work daily, and so many other uncomfortable and random things. I have been battling lyme disease, MCAS, parasites, and hashimotos for the majority of my life and it was only 5 MONTHS ago, after teetering on the brink of insanity, that the right doctor finally ran every test under the sun and started putting pieces together and connecting the dots. I have a wonderful support system but at best this disease is still wildly isolating and at worst I don’t talk about it because so many times I have been too weak to even find the words. I have finally started showing (and feeling) clinical improvements, but it is still an uphill battle with a lot more healing to go. The worst part is not how much of my life has been paused or lost or put on hold in the name of healing— I know I am well on my way to finding my true healing— the worst part is the perpetuated narrative that this disease doesn’t exist and destroy people’s bodies from the inside out making it nearly impossible to:
One woman, Melanie Mann, posted a picture of her in a hospital gown with a bandage on her neck and wrote, “Lyme disease can also look like this, like a year ago this month when I had my first spinal fusion… It can be a weekend of me smiling through pain and gritted teeth because I refuse to miss out on my life or make my husband miss out on his.”
She continued to say, “My reality is true and so is that which was described in your very disturbing and irresponsible @nytimes article.”
Daniel Kuritzkes, MD, chief of the Division of Infectious Diseases at Brigham and Women’s Hospital in Boston, previously told Health that “Lyme disease is always curable.” However, “as with many other kinds of infectious diseases, some people are left with some debilitating symptoms that don’t go away. I like to compare it to polio: Some people who had polio are left paralyzed, but that doesn’t mean they have chronic polio; they have permanent damage from the infection, even after it’s gone away.”
Dr. Kuritzkes went on to say that “it’s possible that Lyme infection leads to some damage that we don’t fully understand yet.”
The contrast between the Times article and the accounts of readers who shared their Lyme disease struggles points to exactly that: More research likely needs to be done for doctors to settle these discrepancies and fully understand Lyme and the effects it has on the body. Perhaps rather than discounting others’ experience with the illness, we should be fighting for answers.
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