Just say no.

by Laurie Edwards

For a brief time, I completely forgot that as a patient, I have the right to say "No."

For years, I'd been conditioned to follow the prescribed regimens and treatment protocols handed to me by a variety of specialists. I was an informed patient—I knew the technical terms for body parts, I knew the correct medications for different conditions, and because I knew my endocrine, respiratory, and autoimmune systems better than anyone, I knew when to question the experts.

Because I had knowledge, I had power. While I spent a lot of time undergoing procedures and shuffling from one office to the next, I knew why I was doing it, and I agreed with the rationale.

This isn't to say I had become smug, but over the years I had definitely acquired an air of confidence and even authority as a patient. I respected my doctors and their vast body of knowledge, but I realized that in my own way, I had a lot of expertise as well.

Confidence dissolved

And then I entered a new specialist's office—in this case, a fertility specialist—and any confidence or knowledge I thought I had quickly disintegrated.

I found myself nodding meekly to rapid-fire assessments of my ability to have children, and all sorts of terms and conditions washed over me. I stumbled to wrap my mind around the new words and their implications, and I was always one step behind the physician.

I left the brief consult with a daunting list of blood tests, procedures—some simple, some fairly invasive—and names of other sub-specialists with whom I needed to schedule appointments. I waited in the hall for my blood to be drawn—at least I could cross one task off of my To Do list that same day—feeling completely overwhelmed and completely out of my element.

"This must be what it feels like to be a new patient," I thought to myself, having never been in this position before.

The diagnostic game of exclusion

We were on a mission to rule out every single possible fertility problem first, theoretically making it easier to know what was wrong if I tried to have children and it didn’t work. I’d played this diagnostic game of exclusion before for other problems, but I’d always had symptoms or some sort of evidence to back up these expeditions.

Now, all we had was the knowledge that most people with my respiratory disease, PCD, have trouble having children because like the cilia in the respiratory tract, the cilia in the reproductive system either did not work or did not exist. There is no test or way to find out for sure if this is the case for me, an irony because of all the tests laid out for me, this is the one I really need.

Dutifully, I had my blood drawn. I made appointments with reproductive endocrinology and fetal medicine high-risk specialists, agreeing that it made sense to assess my risks and my medications well before I was planning on having children.

And then it came time to schedule a particularly invasive and painful procedure, one that would rule out a condition no one for one second even thought I had. The procedure itself wasn't something I'd heard of before or knew anything about, but being a diligent patient, I tried to figure out a time to have it that didn't conflict with my numerous other appointments, my physical therapy, my teaching, my writing, and my "down" time.

Stopped and thought

Then I stopped and thought about it, and about all the time I had carved out for exams and consults and procedures and surgeries over the course of my lifetime, all the sacrifices of time and inclination I made to do what was right for my health, what would give me answers I needed.

And I decided this wasn't one of them. I barely had enough time to do the things I wanted and needed to do; an invasive procedure to confirm I didn't have what we already knew I most likely didn’t have simply wasn't a priority right now. Maybe down the road it will make more sense and yield the kind of information we needed, but not now.

"Can I do that? Can I just say, 'No thanks, not right now. We'll shelve this one for later?'" I asked my chest physical therapist as the test day loomed nearer.

"Of course. It's your body and your decision," he said, surprised that I even had to ask since the old me never passively accepted medical advice at face value.

As if snapping awake from a trance, I realized he was right. Simply because the option was there didn't mean I had to select it, or that saying "No" meant I was somehow a difficult patient or consumer. Saying "No" meant doing what was best for my body and my spirit based on the facts at my disposal. Even if the procedure and all the terms weren't things I knew well, I still had a lifetime of experience to help me make my decision.

(Reprinted with permission by the author.)

Laurie Edwards is Boston-based writer who teaches writing courses on medicine in literature at Northeastern University. Check out her other writing and publications at A Chronic Dose.

Posted: 10/29/2006 in Coping | Also posted in: Relationships

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Just say no.

Confidence dissolved

The diagnostic game of exclusion

Stopped and thought