Why no news isn’t always “good” news: Mixed emotions behind tests and procedures

January 2016: Two weeks, two procedures, two sets of biopsies.
Two times I was driven to my gastroenterologist’s office, handed a gown to change into, instructed to leave a urine specimen, covered in adhesive pads and an array of wires to monitor my heart rate. Two mornings I waited my turn to be greeted by an anesthesiologist in the surgical center, hoping for answers, worrying what I’d wake up to. For the first, I was severely dehydrated; it took 20-30 minutes to get a vein for the IV. For the second, I had a mouthpiece placed between my teeth and strapped around my head. Both times the heart monitor was a beeping frenzy.

Then came the warning. The injection. The thought, as the room began to spin and I drifted into a deep sleep, that maybe I’d wake up to answers.

For at least four months by this time, I’d been feeling like I was flaring. Constant fatigue and weakness, loss of appetite, fluctuating weight, joint pain, worsening migraines, skin condition acting up. One week being in the bathroom nonstop, the next not being able to relieve myself for days on end. Feeling so bloated I couldn’t breathe or focus on anything. Seeing blood, something unusual for me. Cramping and abdominal pain. On Halloween I went in for a CAT scan and, surprise surprise, it showed a whole lot of nothing. So we moved on to the scopes.

As I started coming out of the fog, I kept my eyes closed and tried to listen to the doctors and nurses. I can’t be sure how much of the chatter I heard was real, vs. how much I made up. But it seemed promising. Twice I was wheeled into recovery, given juice to drink and told to pass the air from my system. The doctor would be in to talk with me soon.

Then came the bomb. “Everything looked good,” he said. Twice. And with that, my heart sank. Twice.

No signs of active Crohn’s during the colonoscopy. No polyps. Nothing. Just some trouble preventing a look at the ileum. Nothing alarming during the endoscopy, either. Clear from both ends. And all biopsies came back clean.

With the CT scan from October, that made three times I’d now heard the dreaded, “Everything looks good.”

I went back to work, back to life. People asked how everything went, so I told them. As you can probably guess, I heard many more times how great my news was, how glad everyone was to hear it. And after so many iterations of this, something inside me just snapped. “It’s actually really frustrating to me,” I said to one person. “Everything may look well and good, but I don’t feel well and good. And I still have no idea why.”

Here’s what many people don’t understand about living with a chronic illness—you’re already sick; no matter how “good” the results of any exam, any test, any procedure, your illness is something you always carry with you, something you’re forced to deal with. Every. Single. Day.

You’ll have some good days and some okay days, but the fact is, there will also be bad days. And when you have bad days, you want answers.

December 1, 2007: After four months of being extremely sick, bounced from one specialist to another, poked and prodded and examined intimately and uncomfortably in every which way you can imagine, I had scopes stuck in me from both ends. The night before, I thought I was dying. I weighed 86 pounds, was extremely dehydrated, and felt a tremendous amount of pain. I had nothing left to give. So being wheeled into the hospital the next morning, I was clinging to hope—these procedures, in my mind, were my last chance at answers.

I remember crying as the anesthesia started making everything cloudy. I remember thinking, “Please.”

And I remember waking up in recovery, seeing my doctor appear, feeling like my heart would pop out of my chest. My worst fear? That he’d say they found nothing. That “everything looked good.” Because if that was the case, I was out of options, ready to give up. Because if that was the case, the people who didn’t believe me, or didn’t think it was that bad, or told me I was just stressing about starting college, they’d be able to shake their heads and tell me I was fine.

This is how my life is going to be. Unsubstantiated pain.

And then, it was real. He said, “You have Crohn’s disease.” I don’t think I’ve ever felt a greater sense of relief in my lifetime.

I started taking medication that night, and I’ve never stopped since. I signed online that night (back in the AIM days) and started telling all my friends that I finally knew what was wrong with me. I was so unbelievably happy.

Sound backward, tears of frustration over good news and tears of joy over bad news? Depends on how you come to define and understand what’s good and what’s bad.

When I was told I had a disease, a chronic illness, that there was tangible evidence all over my body, it was validation. My pain had an explanation, a name, even. There were treatments. There was hope. Granted, I had no idea what kind of struggle was ahead of me. But after four months of unanswered questions, four months of people telling me to will away something I couldn’t possibly will away, this was a turning point. It was the best possible result I could’ve asked for.

Lately it’s been feeling a lot like 2007. I’ve been feeling things I haven’t felt in at least 5-6 years. I’ve been struggling and trying to keep up with my life. And I’ve started hearing the suggestions again: that it’s stress, that it’s normal, that I just have to be positive, that everything will turn around, that everything will be okay.

The fear that people might not believe me is still very real. It’s the feeling of having to prove you’re sick, not just say that’s how you feel. I don’t have that proof right now.

My only saving grace is the last procedure I’m scheduled for, the capsule endoscopy. Step 1 is the patency test, to make sure I’ll be able to pass the pill cam once I swallow it. If all goes well, step 2 is getting hooked up for the camera to take photos of my small intestine, then transmit the images to a sensor device I’ll be wearing.

My doctor scheduled this procedure after I woke up from second scope. And it means a lot to me that, beyond his delivery of the “good” news, he wants to take a closer look. It means he believes me. And that means the world.

For weeks, I’ve been having these dreams ending with cliffhangers, waking up in a panic throughout the night. I go in for test after test, my doctor tells me—you guessed it—that everything looks good. And then he says there’s one more test we can do. I get all hooked up, they inject the anesthesia, I cross my fingers that I’ll wake up with answers, and then the credits roll like it’s the end of a movie. I wake up. I’ll never know.

I’ll say it again: it’s my biggest fear.

Of course I’m glad I didn’t end up with horrible news. For a while, I was extremely worried about colorectal cancer. Knock on wood, I was so relieved I didn’t wake up from my colonoscopy to that kind of answer. Then I was worried I might actually have celiac this time around. I’m glad that isn’t the case, either, as I’m already so picky with what I eat and what feels safe for me. So to that end, there were a few positives.

But waking up to hear I still have no validation is devastating in it’s own right. I know my body better than anyone, and I know something is wrong. Twice before this has happened to me, and both times I proved friends, family and doctors wrong. So every time a chance for an answer and a plan of attack slips away, it’s like another weight falls on my shoulders and buries me deeper.

This last procedure is the easiest and most painless of them all, but it’s the one I’m most nervous about. Neither a colonoscopy nor endoscopy can look at the whole small intestine. The capsule endoscopy will take a direct look at the one area we haven’t cleared yet. It has the potential to show evidence that scans may have missed. That means there’s still hope for an answer to what’s been going on, an adjustment in treatment, and an end to this feeling of discouragement.

But there’s also a chance I’ll have the sensor unstrapped, go about my business, and a few days later answer a call to hear, once again, that everything looks good. And then I have no idea what’s next.

I can tell you I’ll be holding my breath, because no news isn’t always good news, and “good” news isn’t always helpful news. Right now, good news is substantiation—an answer, lying in wait, to be photographed. It’s that sigh of relief.

So, colleagues, friends, loved ones… if there’s one kind of support those of us chronically ill could really use above all others, here it is: let us determine just how “good” our news is, before you do.

Please.