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The Mighty asks its communities, “What’s the hardest part of being undiagnosed?”

Transcription:

“People don’t believe the challenges are real if they don’t have a name.”

“It’s not knowing what it is. Is it going to reduce my lifespan? Will I be able to move? Is not knowing delaying treatment that could save my life?”

“Multiple doctors and specialists told me the symptoms were outside of their scope of practice, yet didn’t help us find a new doctor.”

“The hardest part is being here in the first place and wanting so badly for it to just be over.

“It’s having questions that no one seems to be able to answer.”

It’s picking yourself up again and facing the challenge again after each test comes back without an answer.”

While you may not yet have a name for your condition, you are still part of the undiagnosed community. Keep fighting. Keep looking for answers. You are not alone in your journey.

Originally published: July 13, 2018
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