What It's Like to Live With 'The Undiagnosis'

One of the hardest aspects of chronic illness and rare diseases can be the long wait to finally reaching a diagnosis. It’s a reality for many of us that we go on living with the symptoms for years without having a “label” to make sense of it all. We live with what I call “the undiagnosis.”

One of the biggest challenges can be finding a way for friends and family to understand what we’re experiencing while we’re in this period of unknown. We may find ourselves describing all the conditions doctors have ruled out, just to give our friends an idea of the host of symptoms we experience. We may stick to something vague, like telling them we have “some kind of autoimmune disease,” or “something going on with my muscles.” We may avoid social interactions altogether because the process of trying to explain and justify something that’s stumped doctors for years becomes exhausting.

I’ve been living undiagnosed for two years with symptoms that affect my daily life: headaches, dizziness, brain fog, muscle fatigue and weakness, general fatigue, difficulty swallowing, sleep disturbances and post-exertional crash. I use a cane to walk most days. For longer distances, I use a wheelchair. Some days and weeks my symptoms are so mild, I can function almost as I did before. Others, I can hardly get out of bed. I’ve seen so many doctors, run so many tests and drawn so many labs in the past two years that I’m not sure I could even list all of them anymore. I’ve become jealous of people who tell me they have positive lab results because all of mine have been so incredibly elusive!

In this period of unknown, it’s tempting to wonder if I’m imagining it all. Surely by now doctors would have found something to justify what I’m experiencing. I begin to wonder if they’re using that awful medical word behind my back: malingering. It makes me shudder to think about it. I want to be taken seriously more than anything, but negative test after negative test erodes that confidence.

The truth is that many of us with chronic, complex illnesses struggle for years to finally understand what’s happening in our bodies. Diagnosis means treatment and help, sure, but it also means confirmation that we’re not imagining our symptoms. It means we have a level place from which to talk about what we’re experiencing with our friends and family. Diagnosis becomes the holy grail in our health journey. If — like me — you’re still on your quest for that elusive label, take heart! You’re not the only one describing your illness by listing all the things it isn’t. You aren’t the only one questioning your perception. And you’re not the only one hoping somehow a label will make it all right.