The Uncertainty of Not Knowing

Waiting for bad news

Getting bad news about our health can be devastating. Waiting to get the news from tests,  probes, and puzzled experts is fraught with anxiety and stress. Also, and especially when all we hear is “inconclusive – let’s just wait and see.”

In the meantime, the rash is now all over your body. The pain is worse. You can’t sleep. And you wonder if you will see your next Birthday. It is not only stressful and fearful; it gets to be embarrassing. The numerous calls to the Doctor, the visits to the emergency, and the tears falling unbidden are part and parcel of living with this kind of uncertainty. There is not much worse than waiting and waiting and waiting to see how bad the bad news is.

As bad as it feels at the time, it is part of the human experience. We were built for this, too. As nervous as it makes us, we can survive the waiting and the not knowing. But here’s the important thing. We don’t just sit by passively, hoping for the phone to ring. We do our investigation.

I know all the useless, if not harmful, information on the web. Nevertheless, that’s not all there is. I often will check out something on MD Anderson, the Mayo Clinic or other trusted sites. They have useful patient information that doesn’t scare you to death but can shed some light on a certain group of symptoms. We can also be the annoying patient once in a while and go see our Dr. yet again.

Playing an active role:

Learning to be proactive with our own health needs is not being a hypochondriac. Sometimes, we must keep knocking on doors to get to the bottom of the mystery. More importantly, while we play an active role and find different ways to sit and move and rest to minimize the pain and the fear, we can ask for the company of another human who we like. It’s great when that person is close at hand. But that is not always possible. Sometimes, we rely on words of comfort delivered by phone or text.

The relief of knowing:

Finally, the day comes when the bad news you were sure was coming arrives. The difference is that we now go into structured action. More tests get set up, additional appointments with specialists, and a course of treatment, if you are one of the fortunate ones, gets presented.

For some, no active treatment will be available. But there are still ways to improve the quality of life. The relief, even with the bad news, is this. “At least now I know what I’m up against.” How many times have I heard those words uttered through tears and fear? I think about those waiting to hear. My heart goes out to them.

If you are one of those people, there are so many suggestions I could offer while you wait. But I wouldn’t dream of writing them here as though “at least” you could do this. We honestly don’t know what it is like for person X  to live with this kind of uncertainty.

No advice giving

Well, maybe two exceptions. Play an active role. Turn over all the stones. Make the calls. Perhaps a second opinion is in order. Ask for company and/or help when you go to appointments. Even if you live alone, you don’t need to go through the whole thing by yourself.

OK. There is a second thing I want to say. Above all, when someone is waiting to hear, it isn’t helpful to say to them, “I’m sure it will all be okay. Don’t worry.” It is better to say something like –  “You must be very worried. I hope you get some answers. Can I do something to be helpful?” Or do something. A bouquet of sunflowers can help.

I know several people waiting for answers. I’m thinking of you and you and you. It’s amazing what we humans can sustain. How resilient our bodies are. How strong and resourceful we are. How our bodies want to help us get back to equilibrium.  And sometimes, we need to let the tears fall for a few minutes or a few days.

I have a poem written by Rosemerry Trommer where she writes about the waiting…

I can tell that she has been there, and that she is fully aware of what is not in her control.

I bow to the ache of it,
the deep inner eating
away at itself, I bow
to the shivers, the gooseflesh,
the waves of nausea and pain.
I bow to the unnamed,
to question, to dark.
And I bow to the fear
that swells in small spaces
and the vast quiet
that dissipates the fear.
I bow to every other human
who hurts and I bow
to the yellow flowers tonight
blooming in the muck
where the river used to be.
I bow to the ache, goddammit,
I bow to it, and I bow
to the reluctance to bow to it,
bow to the longing to shove
it all away, and I bow,
hush now, just bow.

 I leave you now with a small, gentle poem from a little-known poet whom I like.

In this time of waiting

and not knowing

how things will unfold,

may you find a pool of calm,

a place of peace and rest

deep within your soul.

by Nancy Gibbs Richards from A Small Steadying Sail of Love