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.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Undiagnosed

patient sitting in doctor's office with legs dangling over the bed

When Going to the Doctor Is Your Full-Time Job

Most women (at least in my world) in their early to mid-20s are completing grad school, going to wineries and attending engagement parties. They have a full-time job doing what they love, they’re in a loving long-term relationship and they live in a cute little apartment with their significant other. They may be barely making ends [...]
Woman is sitting on an old floor with cracks.

Alone, Undiagnosed, Afraid, and Needing Advice

I am lonely. As far as I know, I am the only person in the world with my symptoms. I’ve spent everyday of the last five years living with crippling abdominal pain and nausea, which, on the worst days, renders me unable to eat or drink. My gut feels like I’ve spent every single day [...]
student walking to class

A Day in the Life of an Undiagnosed College Student

Every chronic illness forum I’ve come across has an article like this, “A Day in the Life of a Someone with *insert illness here*.” I find them interesting, thinking to myself the entire time how much I relate to the article. I see the similarities of their life and of mine, and it’s nice to see someone [...]
A woman and child holding hands, standing at the shore

The Stigma That Comes With Being Undiagnosed for a Decade

I know what I’m feeling is real. The deep bone pain, heaviness in my limbs, and debilitating weakness, although not visible to others, are weighing on me during my every move. I can’t help but wonder what my friends think when they ask me how I am and I still don’t have a name for [...]