I Am a Voice in the Undiagnosed Community


I am a voice in the undiagnosed community. I am a patient who has traveled as much as 1,100 miles and waited over a decade for a diagnosis. I am a young woman who has cried countless tears out of the dire need to have my functioning body back. I am a mother using every ounce of my being to make it through days of raising my children despite my muscles working against me.

This is a struggle that undiagnosed patients can know all too well. The anger, the pain and the fear haunt me day in and day out as my body deteriorates while my brain wanders through trenches of possibilities. I am the shadow that follows me as I crawl up the stairs in a weakened, debilitated state. The pain I know makes me feel isolated and alone.

My clammy hands grasped tightly to the edge of the mountain, begging the higher beings for enough physical strength to make it through one more day. Yes, it is that bad. It is that difficult. It feels that impossible. My muscles are that weak. No, I am not imagining this. There is a reason for my struggle, and one day there will be an answer.

But until that day, I hang on. By a thread, by a particle, by any ounce of hope I may have left. For, despite what others may think from the outside, I know how real and raw these symptoms are. I know how severely they are weighing down my body. And although I don’t know how long this road may be, I will keep crawling. I will hang off that mountain, my nails entrenched in soil.

I am a voice in the community of those of us who are still waiting. We are the enduring, the mighty; we are the undiagnosed community.

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

Thinkstock image by Ron Chapple Stock


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