It can be so hard to get what we need from the people we love. Or even from the people who are supposed to help us — like our doctor.
I came across an interesting quote from Arthur W. Frank, an author and medical sociologist.
He shares many perspectives on illness, but the one that got me thinking had to do with the pressure put on someone — who lives with a disease — to “adopt the role of the model patient” … in order to get what she needs:
Since all these [family members and friends] value cheerfulness, the ill [patient] must summon up their energies to be cheerful. Denial may not be what they want or need, but it is what they perceive those around them wanting and needing. This is not the ill person’s own denial, but rather [their] accommodation to the denial of others. When others around you are denying what is happening to you, denying it yourself can seem like your best deal.To live among others is to make deals. We have to decide what support we need and what we must give others to get that support. Then we make our “best deal” of behavior to get what we need.(At the Will of the Body: Reflections on Illness, p. 67-68, Houghton Mifflin, 1991)
This may come across more strongly than you feel, but there is some truth to his assertion.
When you are ill, you begin to create a persona to help navigate your relationships — because sometimes your families and friends don’t want to hear about how sad or frightened or worried you are. The “Denial Bubble” is created by each person colluding in the fiction that there is nothing really wrong.
But you pay a price for living this fiction.
Playing the role of “The Cheerful One” — when you are anything but — can create isolation and deepen your sense that you are truly alone. It keeps others from finding their way to be close to you.
If you decide to “make a deal” in your own head — by assuming what others expect without checking it out with them — then you may also lose an opportunity to be authentic.
When we are frightened or vulnerable, we can overreact and decide to act brave or independent and not let others in.
But what about when you want someone’s help or their listening empathy, and they can’t let you be sick? Or needy?
This is the heart of what Frank is talking about — the outside pressure to act a way that is potentially more damaging than the pressure you put on yourself from the inside.
We can get stuck and frustrated when this happens. Our partner doesn’t want to hear about how difficult the day was because of our joints acting up, or our doctor looks away and starts jotting notes when we try to express how painful some symptoms are.
We can make a “mental deal” not to share, and feel resentful or hurt — but that’s not our best course of action.
Find a safe space where you can express yourself without fearing the pressure to be well.
A friend (or a variety of friends), a therapist, a message board all can help with this.
Keep track of how you are feeling — not how others seem to be expecting you to feel. That can take some time to sort out, but it is worth it to distinguish “yours” from “theirs.”
Check out what you’re experiencing with the person who seems to “disappear” when you express certain emotions.
Ask them if you are receiving the message they are giving — or if there is some “crossed wire” transmission and you’re not interpreting their signals correctly.
Make your deals in real conversation instead of in assumptions in your head.
Maybe you need to do more venting than your significant other wants to bear. Can you have some “real time” conversation, and then agree to switch topics for a while? Or agree to do your venting at home at a certain time, and not when you are out to dinner or enjoying a walk?
The most useful thing: begin to notice the external pressure, and think about how you want to respond.
Even a few seconds pause to think about what’s going on in a conversation can help you begin to do it differently.
And that can give you the space you need.