My 'Trust Issues' as a Chronically Ill, Undiagnosed Patient


As I enter the exam room and the nurse asks me to explain why I’m here, I begin to have déjà vu as I mentally prepare to tell my story for the millionth time. I’m beginning to think I should record my tedious, prolonged novel and just press play when I see a new doctor.  My medical history is complicated and lengthy and reciting it so many times has me feeling as though I’m living the movie “Groundhog Day” over and over again.

I bite the bullet and tell my story again: every last detail from the day my nightmare began to the muscle fasciculations that constantly ripple beneath my skin. I have hope that this new doctor may shed light on an unexplored area of medicine that could be causing my symptoms. Maybe, just maybe, this is my day. But as the appointment wraps up, I can tell my day is not here yet.

I have cried while telling my medical novel out of desperation for someone to help me. I have even laughed during these appointments as I realize just how many times I have spoken these words; I feel like a broken record spouting off random words as my mind wanders. I spend money on childcare to attend these appointments and I lose precious time with my children and the end result is usually the same: they don’t know how to help me.

When you continuously have faith in a system and the system repeatedly fails to follow through, you begin to have trust issues — not with a specific person, but with the health system in general. Our health system is not designed for the difficult-to-solve cases. It is designed for the common ailments that are easily solvable. You come in to see one doctor, have some testing done and begin treatment. My case requires multiple doctors to put their heads together, for possibly longer than an hour, and our health system doesn’t provide that amount of time in their workday.

I want to have faith that one doctor will take the time and energy to delve deep into my case. I want to believe doctors continue to think about my case after I leave their office because they genuinely want to help me. But it’s hard for me to trust that this can and will happen. Patients like me who have gone many years without a diagnosis have been swept aside to manage this journey on our own. Despite our difficulty trusting that our health system can lead us in the right direction, we must stay strong, focused and positive; we must have faith it will one day be our day.

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