Why I’m Okay With No Diagnosis

Everybody’s heard the story. Maybe you are the story. It’s the story about the person with mysterious chronic health symptoms that can’t seem to get a diagnosis. The person who spends their life savings and years of their life trying to find a name for what’s happening to their body. Sometimes they get multiple diagnoses, sometimes they get none. Sometimes they’re told they should see a psychiatrist. And there’s even the rare occasion when they do find out exactly what to call their particular set of symptoms.

But then what? Does their life improve? Does their health improve?

I’ve experienced it myself. When I was a teenager, I was almost diagnosed with rheumatoid arthritis on multiple occasions. Why wasn’t I officially diagnosed? Well, you have to have 7 joints inflamed at once for an official diagnosis, and by the time I could get in to the doctor, I never had more than 5 actively inflamed joints. Nevermind the high rheumatoid factor in my blood, nevermind the painful bone spurs I was growing at age 13. I couldn’t get a diagnosis.

As I grew up and gained weight, I’m pretty sure I also spent a few years suffering with diabetes, but I was too poor to go to the doctor to receive a diagnosis (and I didn’t know any better at the time). Now, I consider that I’m lucky to never have been given any of these labels. I just know that I can have auto-immune reactions if I’m not careful about my lifestyle. That gives me so much more freedom and power than any diagnosis ever would have.

I do understand that it’s important as a human to feel a connection to other people who can relate to what we’re experiencing. Sometimes just knowing you’re not alone can be the one thing that helps you make it through the day. My position is not to say that you shouldn’t look for a diagnosis. I’m saying that you shouldn’t expect a diagnosis to improve your life. 

A diagnosis of a chronic condition is a very nebulous thing.

They aren’t caused by an obvious pathogen that scientists can identify and kill with a drug. They are just clusters of symptoms, with each new set of symptoms receiving a new name. According to the Arthritis Association website, there are over 63 different possible diagnoses for arthritis symptoms. And that’s just the beginning.

You have inflammation of the joints? You have arthritis. Your inflammation spread to your skin cells (you get rashes)? Now you might have lupus. You gained weight (your entire body is inflamed)? Now you might have Metabolic syndrome and endometriosis. Did I mention you also have high cholesterol and high triglycerides, and high blood pressure? If you get all of these diagnoses, you will also get a pill for each one, and none of them will make you any healthier.

So what good is the diagnosis when the prognosis doesn’t change?

The problem is that our medical establishment only knows how to deal with acute issues. If you are currently having a heart attack, they can help you with that. If you have cardiovascular disease but have not yet had an acute attack, the “treatments” you will get will do nothing to slow the progression of your disease. Chronic conditions cannot be approached with the same “take this pill and call me in the morning” attitude that our doctors have had for the past 100 years. What works for tuberculosis or strep throat doesn’t work for non-communicable conditions like diabetes, depression, or PCOS.

There’s a simple reason that it’s so hard to give specific diagnoses for these chronic conditions. It’s because they aren’t different conditions. They are all different manifestations of the same thing.

It’s not a coincidence that so many of these conditions come in clusters, or one after another. It’s biology. The environment inside our bodies is disrupted, our hormones become unbalanced, and our immune systems get confused. These aren’t things your doctor can fix with a pill, so no amount of diagnoses will improve your health. 

The good news is that you don’t have to wait for a diagnosis to start feeling better. If you’ve been searching for answers about why you can’t get out of bed some mornings because of mysterious pain, or why your insides feel like they’re being slowly fed through a meat grinder for two weeks out of every month, you do not need to know what the problem is called in order to stop suffering from it.

I’m not trying to deprive anyone of medical advice or encourage anyone to ignore their symptoms. In fact I think it’s important to make sure you don’t have anything acute going on that needs immediate treatment. However, if you cannot seem to get a satisfactory diagnosis, it’s okay. You don’t need one. You are still you.

You are not that condition that you may currently have, whatever it may be. 

You can take back control of your own body by understanding the consequences of what you put into it. When you truly understand how what you eat or don’t eat impacts the environment inside your body leading to all of the symptoms you experience every day, you can change it. You don’t need a name for something you no longer suffer from.

 

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