In a recent post about my upcoming surgery, I mentioned how much I trust Dr. Firm Handshake. Having a doctor you trust – whether it’s an oncologist, a general practitioner, or a foot doctor – is a key part in developing a health care partnership with the people you depend on to keep or make you well. As I was laying in bed this morning trying to will myself to get up, it occurred to me that trust in someone else is much more important even than trust in your doctor, and that’s trust in yourself.
A large part of the reason this tumor was able to grow to record size* was that I didn’t trust myself. I knew something was wrong. I knew for many months. Some of you who follow me on Twitter may recall that last summer I was researching – with Dr. Google, of course – what surgical abdominal scar tissue might feel like and what sorts of problems it might cause. When I couldn’t attribute the weird feeling of separateness in my belly to scar tissue, I decided it must just be bloating and blew it off. As if I don’t know how bloating really feels.
With my scar tissue theory thrown out for lack of evidence, I knew what the problem had to be. Deep inside I knew it, but I kept denying that there was a problem. Why? Because I didn’t want to be a bother. I didn’t want to be wrong. I didn’t want to go take up a doctor’s time and find out there was nothing wrong with me and look foolish. Even though I went through this three times before and knew there was a problem I didn’t trust myself, my own knowledge, or my instincts.
I think a large part of the reason I didn’t listen to what I knew inside was that it’s been driven home by the medical community so many times that we, as patients, shouldn’t trust ourselves. Oh, sure, the literature will tell you that you should, but experiences with individual doctors says otherwise. Here’s an example: Right around the time Scott and I got married, my thyroid went entirely out of control. My heart sometimes tried to beat out of my chest, I couldn’t hold out my hands without them shaking, I was ravenously hungry all the time. I had classic symptoms of hyperthyroid, as well as some not so classic but documented symptoms. One of those was hives, which is how I was diagnosed, because I went to the doctor for hives and he noticed the palsy in my hands. Following my diagnosis, there followed a short period where I was in and out of the doctor’s office with a long list of strange complaints while my endocrinologist tried to get my medication dosage correct. One of the complaints was shooting pains in my arms. The doctor I saw for that looked at my chart, saw that I was being treated for a hyperthyroid disorder, ignored that, and told me I had weak arms and needed physical therapy.
My endocrinologist later told me that shooting pain in the limbs is often a sign of hyperthyroid problems. The other doctor just dismissed my concerns, my experience, and my medical records. He knew best and that was that.
That gave me a big lesson in not always trusting what one doctor says and instead asking another. It was also when I began to realize that I was my most important health advocate. Infertility further drove that home for me. And yet, after all of that, and after three bouts with this disease, I still didn’t trust myself enough to go see Dr. Firm Handshake right away. When Scott and I were sitting in his office to get the results of the CT scan and Dr. Firm Handshake led with, “Well, I have good news**…” I still expected him to say he didn’t see anything wrong with me.
Even though I’ve been in discomfort since August and pain since December. Even though my belly is so big that twice I splayed my fingers over it on a crowded subway train and guys leapt up to give me their seats***. Even though I knew something was wrong, I still expected him to say it was all in my head. That’s sick, right?
So what I’m saying here is this: if you think there’s something wrong, for gods’ sake, so get yourself checked out. Trust the little voice inside you telling you there’s a problem. You know you better than anyone. And if you know something is wrong and go to a doctor who says it’s not, go to another one. We all need to take charge of our own health and make sure we get the care we need and deserve.
* Record size for me. I’m aware there are far larger tumors out there.
** Yes, he really did lead with news of a 28cm tumor with “I have good news.” In a way, it is good news, because it’s one big mass instead of several smaller ones. That makes it less likely to be invasive, so that’s good news.
*** Yes, I did that on purpose. I’m not proud. I wanted to sit. I may as well get SOME perks out of this.