Precious Diagnosis: What’s in a Name?

Radiograph of my Sorrows by Natalia Drepina 

Even if it’s a terrible diagnosis, you crave even the worst titles, just to have a name. Just to put a label on what your body is experiencing. You dream of a diagnosis for the madness eating away at your body and your life.

You want to scream when test after test comes back normal, appointment after appointment ends with no answers, and you wonder how much longer your body will hold out like this. Each frustrated physician and specialist is at a loss and they know anything more they try could likely 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– ALONE.

Instead of one confirmed diagnosis, you have a list of conditions which are more like guesses your doctors have labeled your symptoms with. “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 lucky enough to be diagnosed correctly and immediately with a terrible chronic pain condition called RSD/CRPS. The early diagnosis didn’t help me find remission, but I know that being diagnosed helped me gain some stability. Instead of blaming my body, instead of staying up nights searching online to figure out what might be wrong with me, instead of searching far and wide to find the answer to the screaming question disabling me, I could turn to knowledgeable doctors or helpful research online. I could reach 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 spinal cord damage from a procedure, and a terrible reaction to the experimental medication injected, I became more ill than I have ever been… and I’ve been undiagnosable since. Everything was different this time. Tests were normal, doctors gave up quickly and treated me like they were afraid of me. The chronic pain community I leaned on for so many years prior were also at a loss. I felt so alone, and it seemed that my body was trying to kill me.

Even if it’s a terrible diagnosis, having an answer, having a community, having a list of symptoms, expectations, FDA approved treatments- is so validating and valuable while you are suffering so fiercely. You can finally give a name to the monster bullying you, instead of constantly blaming your own body.

When you have a diagnosis, those who love you can advocate on your behalf. They can organize fundraisers and walks, they can hate the illness inside of 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 speak or eat, or leave your bed… people wonder about your sanity. They wonder about your 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.  On the flip side, the same people  will later whisper that you became obsessed with your illness and seeking out treatments- that it consumed you. Yes, you are trying to save your own life. And your life is worth fighting for!!! Giving up is not an option!!! Be proud you are so aggressive. Anyone who isn’t aggressive on your behalf should be ashamed- not you.

I have come to accept that my diagnosis is “Complex” and 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 some labels that work to 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 are undiagnosable, for now, our illnesses are unidentifiable, but we are not invisible!