When I first found a lump, before I even saw my GP, I became a googling fool. With each progressive test and referral it became a near obsession. I’m sure I’m not unique in this. In fact, although I never mentioned my nocturnal forays into the darkest reaches of the internet to my doctors, they all said something to the effect of “don’t spend all your time on the internet” “try to stick with sites that give accurate information” (I was given a pre approved list at this point) and later on.. “don’t listen to well meaning friends who have been through chemo. Their experience won’t necessarily be your’s” (and hasn’t that been the truth?!). But just like when a woman becomes pregnant for the first time and wants to immerse herself in stories of pregnancy, labor and motherhood.. you can’t always filter the information so all you hear about are the great experiences, perfect patient/doctor relationships, spouses and family that support without fail and happy endings. Even while inwardly cringing and wondering at the motives of a person who will share tales of 36 hour labors, nurse Cratchets that took glee in their misery, babies who cried 24 hours a day for 2 years straight.. you still can’t help listening. And researching. And comparing. Since my diagnosis, surgery, chemotherapy, and impending radiation I have clocked plenty of google time. I’m not sure why I continue to and what I expect to find today that I didn’t find last Thursday.
This isn’t new behavior for me. Even before I had access to the internet. There was a time that I worked as a medical transcriptionist out of my home. I worked for many different disciplines, including cardiology, family medicine, obstetrics, ENT and later psychology and psychiatry. When I started out I would recognize myself in the patient’s list of symptoms. The more unusual and obscure the more likely I was to be experiencing the same thing. I didn’t bother to see a physician regularly during this time.. I had the power to diagnose myself! I would type along, anxious to get to the diagnostic part of the report and find out exactly what was wrong with me. Of course nothing was wrong with me and I knew that, but it was easy at times to “go there”. Compare yourself to someone else based on a handful of similarities. If have the same diagnosis and treatment plan as another patient and she terribly sick with the chemo, will I be? If I’m not does that mean the chemo isn’t working? What if it’s the wrong dose? If someone with my exact diagnosis who did the same treatment has a recurrence 3 years down the road, is that my future? Why is my hair coming back while still on chemo while someone else’s has made no appearance 3 months after stopping? I’m sure that means mine is going to fall out again, right?
It’s honestly crazy making, but on the other hand, comforting in some way or we wouldn’t do it. Btw.. I stopped trying to diagnose myself about the time I switched from medical to psychiatry. Now I only diagnose friends and family.