Growing up, I was always in awe of my doctors. It was almost as if they lived on a cloud. You never ever questioned their expertise, and very rarely would you ask for a second opinion. Going to the doctor was a nerve-wracking experience, where you spoke only when they asked questions. I always wondered what would happen if I did question them. But I never did. I was too afraid.
Afraid of what? Afraid that, because I hadn’t gone to medical school, I had no right to question what they were saying. I can remember some of the early days of my illnesses, being in the ICU and dealing with not one but a whole team of specialists. I had plenty of questions. But who was I to ask about things I didn’t know anything about? So I never did say much, and simply did what I was told.
Back when I was first diagnosed, I was in and out of the hospital every few months. I learned a lot about my doctors and other care providers during these times. More importantly though, I learned so much about my illnesses and my life-threatening allergies. It was a good thing I became an expert, because many times my vigilance in making sure things were done properly actually saved my life.
As I said in my first post, living with two chronic — and sometimes critical — neurological conditions made me realize that if I didn’t start standing up and being a partner with my health care team, no one else was going to tell my side of the story.
Over the years, I have come to terms with the fact that I have some pretty serious health conditions and that my life could change at the drop of the hat. I don’t believe patients can come in and dictate to the doctor how to do their jobs; that would be silly and totally disrespectful. I recognize they have had many years of training in their field of expertise. That said, all the years I have lived with my illness make me something of an expert as well. Involving me in important decisions helps me trust the decisions made about my care. I trust a decision when I am part of the team that made that decision. Just as I respect my doctor, I want him or her to respect me as well.
A great example of this happened about a year ago, when I went into respiratory failure. (In the past 15 years, I’ve been intubated over 20 times and had two tracheostomies.). Thankfully, I had discussed this very scenario with my respiratory specialist. I told my respiratory specialist that when I go into a crisis and need to be ventilated, my preference was to be intubated rather than trached; I had worked hard to stay trach-free, and I wanted to stay that way if at all possible. When we were faced with this exact situation for real, my specialist and I agreed that I would be taken to the OR to be intubated; he explained that he wanted a surgeon to do the procedure, and that if they ran into any problems they would have to trach me.
The surgeon said that if they did in fact have to trach me, they would lighten my sedation and let me know what they were doing. While I was scared to death and praying hard that I wouldn’t wake up midway through only to find out I needed a trach, I was glad that we had had this discussion, that I knew the plan, and most importantly, that I was part of the team that made this decision. I was so happy to wake up in my ICU room, intubated with an endo tracheal tube, not a trach!
My health is pretty stable right now. Even so, when I meet with with my specialist every few months we still discuss what to do in an emergency. We also take the time to celebrate how well I am doing. That is exciting to me.
I am no longer that fearful patient who wouldn’t dare question her doctors, let alone be part of the team, making important decisions and plans for how to keep me healthy. I am thankful for the changes in health care and the new focus on involving patients and families. My respect for and trust in my doctors is much greater today than in the past, due in large part to my own realization that I too am an important part of the team.
What do YOU think? Why are we sometimes afraid of doctors?