To Healthcare Professionals Who Share Those 'Internet Diagnosis' Jokes

To healthcare professionals who post those internet diagnosis jokes on social media, I get it. I do. You’re sick of people coming in with diagnoses they got off the internet. You’re sick of telling someone’s grandmother that it’s just a scratch from their cat, not skin cancer. You roll your eyes at someone who is sitting calmly in the emergency room and texting while informing you offhand their pain level is a 10 out of 10. I get it. Your job is hard. Your job is to deal with people and any job that deals with people is incredibly difficult.

Maybe you’re exhausted and burnt out and sick of fielding calls from “that” patient who is never sick but always coming in for some minor problem or another. So when you see a post online that says something along the lines of, “Share if you hate internet diagnoses” or “Don’t come into my ER with a diagnosis you got from the internet! Like if you agree” or similarly-themed posts that are tailor-made for your exhausted chuckling pleasure, you might share them. You might like them. And, without meaning to, you make the world even more difficult for people like me.

I’ve been sick my entire life. I spent 14 years of my life being shamed for “wanting attention” or “exaggerating” because no elementary school kid should be able to throw up their guts in the bathroom, pass out on the bus, and then carry on with their life like nothing major happened. No fourth grader should have bruises as big as I claimed to have from a simple shove or bump in the hallway. No seventh grader should be able to black out from stomach pain, waking up in the fetal position in a bathroom stall, and then continue to go about their day. And yet, these are a few of the things that actually happened to me while I struggled to stay alive with no diagnosis or medication or help of any kind.

It wasn’t until I took control of my own health and began to fight with the people who were supposed to help me that everything began to change.

The internet saved my life. I mean this sincerely. On the internet, I found scores of articles on my symptoms. Chat rooms and websites dedicated to those of us who were undiagnosed but suffering were my savior. I began to enter doctors’ offices with print outs, lists of possible diagnoses, and a confidence I didn’t know I could have. And yes, I was met with frustration from your end. Who did this little girl think she was? And yet, I began to be listened to. Armed with articles from medical journals, I requested tests I hadn’t known existed before and, surprisingly, got results I had suspected but couldn’t prove for years.

When I met a new doctor or an old one for a new symptom, I gave them a disclaimer that went something like this: “I know you are the doctor and I am not and that is why I am here, but I’ve been doing research on my own and I really think these are illnesses worth talking about and testing for. But you’re the medical professional. What do you think?” I went from being brushed off as an “annoying attention-seeking” patient to one who was intelligent and demanded attention.

Every time I hit a plateau where I felt as though my diagnoses and medications and treatments didn’t quite fit all of my symptoms, I dove deep into the internet to find answers. It took years, but I found them.
I wasn’t diagnosed with Ehlers-Danlos syndrome, the diagnosis that explains all my previous diagnoses and every single symptom I have had since birth, until I was 25. Twenty-five years of not having the proper treatments means that I have irreversible damage in a body that will only continue to deteriorate at a much greater rate than if I had been treated properly growing up. I shudder to think how much longer it would have taken to get help had I not “gotten diagnoses off the internet” like I did.

So before you like, share, or re-blog that post about “problem” patients or “hypochondriac” patients who come in with their “irritating internet diagnoses,” please think about me and those like me who see posts like those and immediately feel ashamed of our fervent search for answers.

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Thinkstock photo by GeorgeRudy

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