I respect the medical profession immensely. Any person who devotes 8, 10, 12 years of their life to studying how to diagnose, treat, and save the human body has earned my respect. There is one caveat however. Doctors do not know all. We as patients need to understand that, and just as important doctors themselves need to know that.
Had I listened to my first neurologist in my journey to find a diagnosis, I am not so sure I would be lucky enough to be writing this article today. For those of us diagnosed with a rare disease like vasculitis, learning to be your own advocate may be the most important asset you possess. If you have a spouse or parent who can aid your advocacy, you are lucky and I highly recommend you utilize that luxury. Most patients and caregivers with whom I have spoken have shared with me similar stories about needing to assert themselves with their physicians when uncertainty reigned.
I was lucky in that I had my wife who fought for me when I struggled to fight for myself. She was never satisfied with what the initial doctors told me and it was not until my 4th hospital and 8th doctor did she and I finally feel settled. It pains me to think about those who do not have any medical background, who do not have great insurance, or who do not have resources of one kind or another to be able to stick up for themselves, question doctors and demand more.
According to the US government, between 44,000 and 98, 000 people die every year from preventable medical errors and misdiagnoses. Certainly, the lives doctors save is ten-fold this number but the point is that mistakes do happen and you the patient need to keep yourself on the front lines until you are completely satisfied.
As your own advocate, you are entitled to not only question your doctor, but if you have symptoms that do not make sense to you, and are simply and easily explained by your doctor, keep searching. When on that scary journey searching for a diagnosis, don’t settle because our bodies speak to us not the physician. Continue to ask questions and educate yourself.
As an advocate, ask for 2nd or 3rd opinions and keep a record of your symptoms. Take notes at appointments, document what the physician talks about with you, and have the confidence to say that you disagree or that you want further evidence supporting your doctor’s claim. One of the most important ways to self-advocate is to bring someone with you to all of your appointments. Two sets of ears and eyes are often better than one, especially if the one set is the patient’s who is distracted by their own symptoms to fully and clearly process what the doctor is communicating. When my doctor told my wife “please don’t talk as we won’t have time to complete the assessment” is when I knew that it was time to seek out answers elsewhere.
“Too err is human, to forgive, divine”