When Your Condition Continues to Be Undiagnosed


Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.

You want to scream when test after test returns normal, every appointment ends without answers, and you wonder how much longer your body will hold out like this.

Each frustrated physician is at a loss, and they worry that anything more they try might only make you worse. So, one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone.

Instead of one confirmed diagnosis, you have a long list of symptoms masquerading as conditions. “Chronic migraine,” for example, or “vertigo.” You know they are only symptoms of a larger, more pertinent illness no one can pinpoint.

When I was 22, I was diagnosed correctly and immediately with a rare chronic pain condition. The early diagnosis did not help me find remission, but being diagnosed afforded me some stability.

There are no words to express my devastation; the world as I knew it had crumbled.

But, instead of blaming my body, instead of staying up nights searching online to identify what might be wrong with me, instead of spending years looking far and wide to find the answer to the screaming question disabling me, I could turn toward acceptance, coping, and treatment. I sought knowledgeable doctors, read helpful research online, and reached out to support groups with the name of my condition. I could blame my disease, and so could my family.

At 28, I had a different experience. After an unforseen reaction to an experimental procedure, I became more ill than I have ever been… and I’ve been undiagnosable ever since. Everything was different this time around.

Tests were normal, doctors gave up quickly and treated me like they were afraid of me. They seemed to find any reason to brush my rapidly deteriorating body under a rug of bizarre excuses.

I felt so alone, and it seemed that my body was trying to kill me.

For many patients with rare diseases, it can take years to recieve a proper diagnosis and treatment.

Even if it’s a terrifying prognosis, having an answer, a community, having a standardized list of symptoms, expectations, and FDA approved treatments, is so validating when you are suffering so fiercely. You can finally name the monster bullying you, instead of blaming yourself and your body.

When you have a diagnosis, those who love you can advocate on your behalf. They can donate to fundraisers and participate in walks, they can pray there’s a cure for the condition torturing you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move, or sleep, or eat, or leave your bed… people wonder about your sanity. They wonder about your personal will and your strength.

They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling.

Ironically, the same people will later whisper that you’ve become obsessed with your illness and seeking out treatments – that it has consumed you. Yes, you are trying to save your own life. And your life is worth fighting for! Be proud you are aggressive. Giving up is not an option!

As for myself, I have come to accept that my diagnosis is rare and complex; it may in fact forever be “undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.

We do have labels which help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill,” “rare disease,” and “spoonie.”

We may be undiagnosable for now, our illnesses might not be easily identifiable, but we are not invisible.

Follow this journey on A Body of Hope.

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