30 Sep The Hidden Task of Serious Illness

by Eileen Glover, SIP Program Coordinator

or, “How did I get in this boat, and where exactly is it going?!”

What I have heard most from serious illness support group participants is what a relief it is to be able to spend time with others who are “in the same boat.” The idiom implies shared risk or unpleasantness, but nonetheless the urge to share with others going through similar experiences is very strong. 

For me, “being in the same boat” initially conjures up the image of hunched figures in an open boat rowing furiously through foamy, rolling swells with dramatic clouds looming behind them. Their only focus is to get back to dry land and out of that boat as quickly as possible, but for now they have only this small group of people sharing the same set of dangers. It is a dark and dramatic scene.

Serious illness brings massive changes to one’s life. There are many obvious “tasks” associated with serious illness such as arranging appointments, educating oneself about the disease, attending treatments, keeping good records, dealing with insurance companies, managing pain, getting enough rest, and much, much more. 

And, on top of all that, someone going through a serious illness also has their life upended due to the fact that they can no longer reliably predict what their long- or short-term future will look like. Regardless, they now must take on the 24 hours a day, 7 days a week, ever-changing list of things they have to attend to while coping with their own anxiety, fear, and overwhelm as best they can. 

What many people don’t realize is that the person who is ill is also taking on, and managing to some extent, the feelings and experience of everyone they interact with in the course of their days. 

Support group participants often describe deep concern about how their experience is affecting those whom they care about. The person who is ill can see that the reality of the illness is also affecting those around them who are, in turn, going through their own experience of caring for someone they are close to who is ill. It’s enough to make anyone’s head spin!

The amount of cognitive and emotional work that goes into almost every interaction is staggering. Here’s a small example of someone who is ill and having a rough day and what they might consider when someone checks in to see how they are doing: Should I say that I am having a really hard day? What can this person say or do that can actually be helpful? Will it make them worry? Do I even want to talk right now? Will they feel uncomfortable and not know what to say or do? Will I feel worse for having been honest? Will this cause them to pull away from me?

I hear the group participants talk about how these thoughts are almost constant and how exhausting it is to be on this treadmill of monitoring their own feelings, needs, and expectations as well as those of everyone around them. Peer support group is one place where they can share this burden and the feelings that come with it. Sometimes they can even laugh about it!  

Having a designated time in which participants can honestly share their experiences and learn that others have the same thoughts and feelings can offer a sense of respite and relief. The scene in the boat is very different now. I can see the glassy, pale green waters gently buoying the boat. The clouds have passed and now the sun pleasantly shines. There is the soothing feeling of being supported by the sea, while enjoying the scenery and the gentle breezes. Passengers in the boat are feeling a sense of camaraderie and connection. Sometimes it’s really good to be in the same boat.

The Serious Illness Program (SIP) was created to offer support to people who are going through life-altering illnesses such as organ disease and cancer. Peer support groups are the heart of the program, creating spaces where people can come together in the comfort of knowing that those they are sharing with others who truly know where they are coming from. SIP also offers one-on-one volunteer support. 

Contact Eileen Glover, SIP Coordinator, to learn more: eileen.glover@brattleborohospice.org 802-257-0775 ext. 106.