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Why I Won't Listen to Those Who Tell Me Not to 'Google' My Undiagnosed Symptoms

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Medical professionals often tell you not to Google your symptoms. Even random people tell you not to Google your symptoms. They’re sure you’ll get frightened and convince yourself you’ll die soon. Leave it to the professionals –they know best. Right?

In my experience, it’s been the opposite. I live just outside a rural town. I would have to drive over two hours to reach competent doctors. I’ve seen many in my area and have always felt as though they blew me off. Self-advocacy was my only option.

I don’t believe in treating the symptoms of an undiagnosed illness. What if we do something wrong? Getting a diagnosis, even for a rare incurable disease, means I will know how to manage and treat my symptoms—even more, it means I can connect with other advocates like myself and learn from their experiences.

Being undiagnosed is scary, but in my experience, Googling my symptoms hasn’t been any scarier. I knew from my symptoms that I could have everything from a potassium deficiency to ALS—so it was scary to begin with. I was experiencing episodes of paralysis. My endocrinologist acted as if this was a normal symptom of her “in-range” treatment of my hypothyroidism, but I knew it wasn’t. I knew something else was wrong.

Many rare diseases take years to diagnose, and even longer for women because doctors tend to disbelieve their testimony.

It boils down to this: all the progress of becoming diagnosed and getting treatment has been from my own research—not a doctor’s. I didn’t forego doctors, but through my research I could help guide them and ask for tests that could rule out differential diagnoses.

Maybe I’m blessed with an analytical mind, but I could detach myself and research symptoms. I can consider myself “the patient” while keeping an open mind.

It’s been a difficult journey that has spanned years. I’ve had people tell me what I should or shouldn’t do… when they don’t have a clue about my symptoms or the tests I’ve been through.

They tell you not to Google symptoms, but I never would have found diagnoses if I hadn’t.

I would be back sitting in my ex-endocrinologist’s office having her tell me my symptoms were normal. It took too long for it to occur to me that she was such an bad doctor, all of her patients probably felt bad, too. For my thyroid, I learned that “in-range” isn’t always optimal. And by talking to fellow patients, I learned that the standard treatment for hypothyroidism is often lacking and I should self-advocate.

For my sleep disorder, I learned that I have a rare disease called sighted non-24, which often looks like insomnia. So, although it’s difficult to treat, I’m able to manage my life better and more productively now that I know what’s wrong.

I also learned that my episodes of paralysis and weakness were caused by a rare ion channelopathy disorder—my muscle cells weren’t getting what they needed and the fluctuations were making me so weak I couldn’t lift my arms. I ordered my own genetic testing and provided my neurologist a list of differentials to rule out. Today, I continue to order my own blood tests and work with doctors who are open to learning new things—not stuck in the past.

It’s my belief that a doctor who refuses to learn anything after medical school should not be a doctor. They should work with you on a functional level and help research and treat your conditions.

I also learned to question the veracity of common blood tests ordered by my doctor. I was surprised to learn how many were unreliable or had excessively loose ranges.

No, Googling symptoms isn’t for everyone. If you have good doctors, you’re lucky. I’ve learned a lot in the past few years, including learning about illnesses I ruled out. But most of all—I’ve learned to self-advocate because no one else will work for my health as hard as I will.

Originally published: April 2, 2019
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