Living in the Meantime
As part of Smart Patients Living With It series, this conversation focused on what it takes to keep going when the future feels unsettled
When a chronic health problem causes the future to look uncertain, the mind tries to fill it in. It rehearses the phone calls, drafts the bad news, imagines scan results before the scans have even happened, waits with trepidation, and has trouble letting go if the news is good – because there's always next time.
This is what people do, especially after something frightening has happened. The waiting between these events feels like it never stops, causing our view of the future to hover in suspense. It's a painful way to live.
Smart Patients hosted a week-long discussion on this as part of our Living With It series. Members talked about the uncertainty that comes with serious ongoing illness and so many kinds of waiting: Waiting for the scan, the test, the phone call, the portal notification, the moment a provider finally says what the results mean. Waiting for treatment to be proposed and then started, waiting for insurance approvals, waiting for clinical trials. Always waiting for the next shoe to drop.
It’s in that waiting when people start to wonder about new symptoms or run through the worst-case scenario in the middle of the night. As one member described, it feels like a heavy wet blanket is hanging just inches from her face.
Social worker KrisAnn Talarico joined us once again to facilitate this conversation. A primary theme that emerged was the importance of staying in the now. When the mind races ahead, she suggested, come back to what is actually known right now. Right now, I don't have the results yet. Right now, I am noticing fear, not facts. It may sound too simple to have a steadying effect, but it's a way to interrupt the spiral.
Members shared their own versions of staying in the now. Not forgetting to breathe. Walking in nature and paying close, curious attention to it. Naming a moment for exactly what it is: hard.
KrisAnn concluded by summarizing everything. She concluded by reminding everyone that living with uncertainty is exhausting, and that managing requires skills developed only with time and concentrated effort. It's difficult to tolerate the unknown, holding hope and fear in the same hand. Separating what is possible from what is probable takes discernment. Catching a spiraling thought before it carries you off is not a small or simple thing. Neither is making plans without guarantees. They are learned behaviors, and they really help.
They won't make the uncertainty disappear. Instead, they are tools that make not knowing more survivable.
Click here to download this tool.
Thank you to KrisAnn Talarico, LICSW, OSW-C, from North Star Cancer Coaching LLC for her willingness to host this discussion with us and for her incredible skills in facilitating such difficult topics.