Finding Care in a System That Doesn't Understand

 Navigating the medical world with dystonia has brought its share of challenges, and one of the most frustrating aspects has been the recurring loss of doctors. Over the past few years, I've experienced the abrupt departure or retirement of two doctors who were treating my dystonia, leaving me suddenly without care and scrambling to find someone new. It’s hard enough to manage this rare condition, but it feels even harder when I have to repeat my story and search for someone willing to take on a dystonia patient.

Finding a doctor who understands dystonia can be like searching for a needle in a haystack. Many doctors aren't entirely familiar with what dystonia is or what might cause it. I get the sense that sometimes, doctors may feel they know most of what there is to know. But as someone living with this unpredictable condition, I've come to accept that it's okay to say, "I don’t know." Unfortunately, humility seems to be lacking in some parts of the medical field, where saying "I don't know" might feel like admitting defeat.

And yet, isn’t that the reason it’s called "practicing" medicine? We’re all on a journey of learning—patients and doctors alike. But what hits hard is that when a doctor leaves without warning, it feels like they don’t care about the patients they’re leaving behind. It’s as if we’re just another name on a chart rather than real people who rely on them for specialized care and guidance.

Referrals are tough to come by, too. Not every doctor wants to take on a case of dystonia. It’s not a well-known condition, and that can make it feel like finding an open door is next to impossible. And then there’s the additional frustration of government officials stepping in to shape medical policies, often without understanding the unique needs of patients with rare conditions like mine.

For those of us with rare or complex conditions, it’s a journey of patience, resilience, and persistence. Navigating the healthcare system isn’t easy, but I’m here to share that if you’re on this path too, you’re not alone. We keep pushing forward, one doctor at a time, one appointment at a time—because that’s how we find the care we deserve.