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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.

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Thinkstock photo via Ingram Publishing.