What I Wish People Knew About Being Chronically Ill but Undiagnosed

As you push your shopping cart through the checkout line, you see magazines with all sorts of headlines.  “How to Deal With Infertility.” “New Strategies to Control Diabetes.” “Weight Loss 101.” While these are all important topics, I’ve noticed you don’t see “How to Live Life Being Undiagnosed.”

We may only be a small percentage of the population, but our stories matter. We are a strong group of resilient fighters who have found ways to make it around hurdles, over mountains and through storms. But we are not surrounded by an understanding world. We live in a universe where most people don’t know an undiagnosed community exists, and we must change that.

Let’s open the world’s eyes to the reality of searching for a doctor who can help. Let’s show them the many years, the decades and lifetimes spent seeing doctors, visiting new medical communities and trying new treatments.  Paint them a picture of the raw truths we live with from the moment we wake up in the morning until we settle into bed at night. We want it to be known that we must adopt a new mindset once we overcome the denial, the shock, and the depression of realizing our old bodies are gone and no one knows why or how to make it better. We have rare or unknown diseases that can only be diagnosed with countless hours of research and a deep desire to understand.

Medical professionals often can’t or won’t take the time to listen to us. We are told there may never be answers. We are misdiagnosed multiple times. We are brushed aside and assumed to be exaggerating. We are often forced to search alone, without the aid of medical professionals. We sometimes wonder how we will ever get out from under the rubble that crushes our every inch. We may lose friends because they just can not understand our situation. We try to convince our family that we really are doing that poorly. We become desperate to find even one doctor that will take the time to help us.

Our lives revolve around searching for a diagnosis while trying to maintain all we wanted in life. We may give up on some dreams, knowing we cannot have it all. But we can’t give up on our search, not until we can understand what has disrupted the homeostasis within us. And while many of us have been on this path for what feels like an eternity, we know we must continue for our own life and for the lives in our mutual undiagnosed community. Having no diagnosis always leaves room for better days to come; your answers could be just beyond the horizon.