To Google, or Not to Google: The Undiagnosed Patient's Dilemma


Google doctor is understandably every doctor’s pet peeve, but let’s be honest – we’ve all done it once or twice. It is mostly harmful to the ordinary patient seeking medical advice; however, my condition makes me a not-so-ordinary patient, and I often struggle with the question: “To Google, or not to Google?”

In the early days of my illness, when all my doctors were saying it was multiple sclerosis, I became so Google-educated on this disease that I could have written a book on it. It was obsessive and a ridiculously unhealthy amount of research that consumed most of my time for close to a month. A little while after my scans testing for MS came back all clear, I vowed to stop obsessively researching illnesses that could explain my symptoms and let the doctors do their jobs finding it. Months passed and still I received no diagnosis. Surely it couldn’t be this hard to connect the dots and form a picture? It wasn’t as though I only had a few symptoms to go off – I had a four-page detailed list of my symptoms that continued to grow every week! But here I am, nine months on, and still stuck in “medical limbo.”

 

I began to talk to others in similar situations to me, who each had different ideas of what my illness (or illnesses) could be. Now some people don’t like others suggesting possible causes for their symptoms, but I find it helpful when people make educated contributions to my health. “Have you heard of blah?” “Have you been tested for blah blah?” “You should look into blah-de-blah.” People were throwing all sorts of conditions at me I’d never heard of before. Each time I would debate: Should I Google them? I’ll just read one page on it, nothing more. It will be fine. I eventually talked myself into it and began to look into the things people were suggesting. Some of this was actually really helpful for me – some websites pointed out things I had no idea could be symptoms, and others put symptoms in words I could use to explain them myself.

The more people I spoke to who had spent a significant time in “medical limbo,” the more I became convinced that Google doctor is not totally useless and should be used to an extent in my current position. Most others I spoke to revealed that if we don’t push for certain illnesses to be tested and ruled out, it doesn’t happen. A few times I’ve mentioned to a doctor that I would like to be tested for a certain illness and they brush me off because clearly I’ve used Google doctor and am not qualified to make an assumption based on that.

Well, here’s the thing – the fact that this is my body experiencing these symptoms gives me all the qualification I need to ask questions and state facts. The fact is my symptoms line up with these particular illnesses and I want to be tested for them, not dismissed because I don’t have a medical degree. If I don’t advocate for my health and my body, then who will? If I don’t push doctors to go down certain paths, then who will?

I’m not saying I am in any way close to being qualified to diagnose myself, but at the end of the day no one else knows my body like I do and I have a right to express my thoughts and push for certain things to be ruled out. I have decided it’s OK to Google sometimes and educate myself on potential illnesses. However, I refuse to become obsessive again and convince myself I have found my diagnosis. I will allow myself to briefly look into certain things to give me an idea of the kinds of tests I should push for, but nothing more than that.

To Google, or not to Google is a very difficult question for me – my answer at this current point in time is to Google, with limits and self-control. I do understand the negatives of doing this but I think for me the positives outweigh them.

If you are a not-so-ordinary patient like myself, let me know what you think. Do you Google? Is this helpful or detrimental? Even better, are you a doctor, and what is your opinion on this? Is there a ‘healthy’ limit on using google in my situation? I’d really love to hear your opinions, whether they agree with mine or not.

This post originally appeared on Finding Rainbows in the Dark.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ingram Publishing.


Find this story helpful? Share it with someone you care about.


Related to Undiagnosed

black and white photo of a person walking down a long road

Learning to Accept the Unknown with an Undiagnosed Illness

This time last year, I would never have considered myself disabled, chronically ill or a spoonie. This time last year I’m not even sure if I knew what a spoonie was. I was running anywhere between three and seven miles a day in preparation for a half-marathon. I had just finished a track season that [...]
woman sitting on her bed and looking upset

6 Emotional Side Effects of Being Undiagnosed

These six things emotional side effects are all connected and create a lot of difficulty for people living with an undiagnosed condition. I can’t tell you for sure that a diagnosis will fix things, but in a lot of ways a diagnosis might make them more bearable. Being sick is shitty, but being undiagnosed can be worse. [...]

My Long Road to a Diagnosis Doesn't Have to Be Traveled Alone

On any given day, I could be dealing with pain ranging from a four to a 10-plus. I’ll sometimes make a status update praising Salonpas patches or talking about how I have to use what feels like an entire bottle of pain cream. I don’t particularly like talking about my chronic pain — or any [...]
girl walking down a path with her hands raised in peace signs

How I Continue to 'Seize the Day' in My New Life With Illness

It seems impossible to pair concision with debility, yet no words truly capture change. At the age of 19, after my sophomore year of college, an anomalous reaction to a medication felled me from college and left me contemplating the tensions of articulation. Before my condition began, I was a life-long dancer and an avid [...]