Aspiring Poet, heartfelt thoughts.I Have Dystonia, bipolar, and an Avid Southern Gospel Music fan

 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 ...

 Living with genetic dystonia is like waiting for a storm that you know is coming, but you can never predict when or how it will hit. For me, it’s not just the physical contortions—though they’re bad enough—but also the mental toll. Along with dystonia, I wrestle with bipolar disorder, manic depression, and schizophrenia. It's a lot to manage, and while I feel like I’ve got some control over it, there’s always this lingering question: When will it strike again? Will I go back to where I was? In our family, the males seem to deal more with the mental side of things, while the females experience those intense dystonic storms that twist the body painfully. But here’s the difference: I have some control, at least enough to feel like I can manage most days. My sisters don’t have that. For them, it’s not a question of if the storm will come, but when. No matter what side of the struggle you’re on, it’s always unpredictable, and it’s always painful. For me, mornings are the hardest. We ...