Today I ran across a sad article about a 19-year old young woman who died from liver cancer in 2013 because she was ignored by her doctors. After having a piece of her liver surgically removed because of a rare cancer, doctors hoped that she would recover but as time went on, she felt worse.
Afraid that her cancer had returned, she began researching information online and tried to relay this information to her doctors. They told her to “stop Googling” her symptoms and her symptoms got worse. When she was finally admitted back to the hospital, they discovered her cancer did return, and she died 10 days later. Now the hospital is formally apologizing to her family for what the article calls a “fatal lapse in communication”. Wow.
How many of us in a panic have scanned websites like webmd.com and feared that we had 3 different diseases, all at the same time? The young woman knew something was wrong with her body but her doctors discounted her information and went with their own judgment. That got me to thinking, how much of a doctor’s judgment can we really rely on? Don’t get me wrong, I respect the medical profession and the years of schooling, experience, and practice required to become a doctor. But sometimes it seems that “practice” isn’t enough. Instead of ignoring their patient, they should have respected the fact that she knew her body, and that she was correct when she suspected something was wrong. Even if there was nothing wrong, imagine how the story would be different if they had heeded her request earlier?
There are a lot of times that doctors get things right; but of course there are instances where things go wrong and doctors seem to be in the same place we are: guessing, investigating, hoping to find out what’s really wrong before it’s too late. With my skin issues, my dermatologist, though the expert, has often been at a loss to understand just why my skin reacts the way it does. Sometimes I feel like she’s learning more than I am during our visits. Along the way, as I have explained the things I’ve learned about myself (for example, that I cannot eat fried foods, that milk is not my friend, and neither are nuts), she has helped me fill in the gaps and given some great advice on how to care for my skin. It has definitely been a collaborative effort, but I appreciate the fact that she never refutes what’s happening to me, but tries to understand WITH me and helps to move forward. There have been treatments she has suggested that I flat out refuse and she works with me for alternatives. I can only imagine how different that young woman's experience would be had her doctors had been more open a little early on.
If you’re struggling with a diagnosis or symptoms, below are a few things I’ve learned about working and engaging with my doctors:
Study your body. I will always stick to this fact: you know your body best. If you’re patient enough and willing to listen, your body will tell you what you need to know. Often times there are subtle changes in how our body functions but we miss it for lack of paying attention. You will be in a much better position and have richer discussions with your doctor if you can give a complete explanation of your symptoms or whatever issue you’re dealing with.
Advocate for yourself. Doctors should be respected for the time they’ve invested in learning their craft. After all, you want to be respected for the education and experience in your field, right? However, it would be arrogant to assume that you know everything and that you’ve seen it all. Sometimes you will get it wrong and so will your doctor. If something doesn’t feel right, speak up. The bottom line is that you are paying for a service and you should have a say in whatever treatment you are receiving.
Don’t get discouraged. In the beginning when my skin started to rebel against me and I was uncovering the root of my problems, I began to make certain lifestyle changes. When my friends and family noticed, I definitely heard statements like, “there’s nothing wrong with you”, or “it’s all in your head”. I am fully confident that they care for me and didn’t mean any harm, but I knew there was something wrong. I had to ignore their comments and keep it moving. Sometimes you have to look like the crazy person in the room to get to the bottom of your situation. People will begin to understand later on, but for now don’t concern yourself with their opinions.
What has been your experience with your doctors?
Read the article I reference here.
- June 22, 2015
- Tiffany A