Why It's Ridiculous to Tell Patients Not to Use Google

You may have seen the meme “Don’t Confuse My Medical Degree With Your Google Search” circulating the internet lately. If you are a fellow spoonie, the meme might be slightly infuriating for a couple of different reasons. Living in the era of technology has brought a lot of good and bad into our society, but arguably one of the biggest advantages is having an unlimited source of information available 24/7.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Like many other spoonies, my experience with doctors has varied widely. I’ve had some great doctors who have been compassionate, caring and competent. But I’ve also had some doctors who are clearly burnt out and don’t really care about their patients anymore.

Recently, I had an experience with a primary care physician who I asked to refer me to a cardiologist. I had an echocardiogram that showed a Mitral valve prolapse, low systolic function and ejection fracture. Those are both very common in patients with connective tissue disorders and are rarely life-threatening, but they are worth monitoring. When I asked this doctor for a referral to a cardiologist she was reluctant saying, “50 percent of all people have Mitral valve prolapses. They really aren’t special. I can refer you, but you’ll just be wasting your money on a copay to be told nothing is wrong with you.”

If I had not googled my condition I might have been cowed by this statement, but because I was armed with information I knew not to back down and insisted I be seen by a specialist. Not only was this gross misinformation on her part (only 2 percent of the population has Mitral valve prolapses according to the American Heart Association), but she was encouraging me not to seek specialist care (and what I do with my money is not really a doctor’s concern).

When I was first experiencing neurological symptoms and before I had an official diagnosis, I was chastised by my neurologist for googling my symptoms. I soon stopped any research on my health, but I wish I hadn’t. The neurologist diagnosed me with conversion disorder and encouraged me to begin seeing a psychiatrist, which I did. After several years of treatment, I was still not better. And now I know why. When I was diagnosed with Ehlers Danlos syndrome I kicked myself for blindly trusting such a diagnosis and not researching potential alternatives. If my sister had never been diagnosed, I’d still be miserable and sick instead of receiving the appropriate treatment and monitoring that I do today.

But even though I now have the correct diagnosis, I still encounter doctors who will bristle at the thought of their patients doing any research.

Why? Do they want to keep their patients uninformed? Do they want their patients to blindly believe them if they give them misinformation? Do they not want their patients to know about their own bodies? Are they simply Luddites? Or do they suffer from moral injury?

I will continue to research my medical conditions. I want to find the best foods to fuel my body. I want to find the best exercises to keep me strong. I want to find strategies to avoid fatigue so I can be present with my family. I want to connect with friends who understand what I’m going through. But, I also want to know warning signs to look out for and what I should avoid in order to protect my health.

So, in response to the meme, “Don’t confuse my medical degree with your Google search,” I say, “Don’t confuse your two-hour lecture once upon a time in medical school with my lifetime of experience living with my condition.”