The news that Justin Timberlake is suffering from Lyme disease was met with compassion from the Lyme community, not just because we know what he’s going through with the illness, but because we understand what he’s experiencing with public perception of it.
According to The New York Times, Timberlake had to cancel three shows during his two-year Forget Tomorrow World Tour, once citing illness. Yet before his announcement, those cancellations and his performances during the tour had been judged as lazy, tired, lackluster, and disappointing. A BBC article notes that “[t]he star had come in for criticism from some fans on social media for underwhelming performances.” Some even wanted refunds.
In fact, Timberlake was pushing through nerve pain and fatigue just to be able to perform at all. In a statement on Instagram, he said, “If you’ve experienced this disease or know someone who has—then you’re aware: living with this can be relentlessly debilitating, both mentally and physically. When I first got the diagnosis I was shocked for sure. But at least I could understand why I would be onstage and in a massive amount of nerve pain or, just feeling crazy fatigue or sickness.”
Oh, do we Lyme patients know how that feels! With many symptoms like brain fog, neuropathy, exhaustion, headaches, and joint pain happening on the inside—invisible to the outside world without obvious markers like a wheelchair or cast—our suffering is often misunderstood and invalidated. Timberlake’s diagnosis revealed the all-too-familiar harsh criticism and quick judgment faced by many Lyme and other invisible illness patients. In my memoir One Tick Stopped the Clock, I explain how I pushed through years of symptoms in an effort to prove that I wasn’t lazy, that I had a good work ethic, that I wanted to excel.
I ended up bedridden.
I hope Timberlake gets effective treatment and does not meet the same fate, but I certainly understand his desire to keep going. He writes, “I decided the joy that performing brings me far outweighs the fleeting stress my body was feeling.” This is a balance so many of us are always trying to strike: living our lives while managing our illnesses, weighing risks and benefits of every action, trying to explain to others how we can sometimes push through an event only to be wiped out for days afterward.
It can also be frustrating to feel like you have to over-explain your situation in order to be believed. Despite his celebrity status, Timberlake says in his Instagram post, “As many of you know, I’m a pretty private person.” Yet he felt the need to reveal his diagnosis, “which I don’t say so you will feel bad for me—but to shed some light on what I’ve been up against behind the scenes…I was reluctant to talk about this because I was always raised to keep something like this to yourself. But I am trying to be more transparent about my struggles so that they aren’t misinterpreted.”
So, how is a Lyme or other chronic illness patient to navigate these tricky waters? Here are some ideas: