The Blessing and Curse of Online Medical Information

The internet is an amazing source of information and knowledge. However, having all that medical knowledge at our dislocating fingertips can be a curse as much as a blessing. I have been able to learn so much about my rare illnesses from online medical journals, support groups and academic articles. I have hypermobile Ehlers-Danlos syndrome and the longer I walk this journey, the more I notice that most doctors do not have knowledge of my condition. Or that the knowledge they have is false, skewed or outdated. I have had to learn on my own about my illness and answer my own questions. The internet has played a significant part in my healthcare. However, I feel that doctors now explain things less and expect patients to research findings on their own.


A few weeks ago, I had an MRI of my brain done to find out the cause of my migraines. Thanks to the miracle of technology, my results were uploaded to MyChart (an electronic, online medical record). Now, I love MyChart and patient portals. It makes communication easy, quick and efficient with your providers. First, I never recommend reading the results of anything to do with your brain before you talk to your provider. It can cause a lot of unnecessary panic. Secondly, make an appointment to sit down and discuss what the results mean for you and your life. I opened my results and read them. When I saw the word schwannoma it did not alarm me because I did not know what that was. The other finding was a chiari malformation and I knew what that was from my own research.

When the doctor’s office called, they just read off the findings to me. I calmly explained that I had already read that but I wanted to know what that meant. The woman on the phone had no answer for me. She was apparently only a secretary at the practice. So, I had to go out on my own and do research. Turns out a schwannoma is a tumor. Although it is typically benign, it is still a brain tumor! I called back and asked if the doctor would call me back. Much to my surprise she acted much in the same manner, as if I knew what these conditions were and what the findings meant. The curse of WebMD and sites like it. While they are helpful in finding answers, doctors are assuming that patients can just get their answers there. 30 years ago, it would have been a completely different story. A patient would not have been expected to go to the library and comb through medical journals to find out what a condition was. So why is it happening now?

I should not have had to learn that I have a brain tumor from the internet or computer screen. I take responsibility for my own impatience and opening the results before speaking to my doctor. But their attitude is on them. There should have been some explanation, compassion and humanity during this scary time. I received none of that. I have continued to do research on my own and my mind is more at ease with what I have found. Unlike my EDS, this is fixable. I wish I had a solution to the problem that is brewing in our healthcare. I have found that being informed and advocating for myself is the most effective tool in fighting rare illnesses.

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Thinkstock photo via wmiami.

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